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Intuniv for ADHD: Understanding Tenex, Guanfacine and Alpha 2
Adult Executive ADHD: “Those Wrecked by Success”
July 16, 2009Why SPECT Brain Imaging: Details Live on CorePsych Radio
July 28, 2009
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ADHD Medications: The Science of Mind Evolves
Good Morning! – to a new world with more ADHD medication treatment options coming this fall. I just replied to a previous comment regarding the use of Tenex, guanfacine, [previously identified as helpful for tic disorder], and will send out this brief note with an interesting reference worth reading.
This is a short note, introducing a new ADHD medication vocabulary. Take a moment sometime this week to chase down these various links – they will likely soon become part of your everyday thinking in ADHD medication treatment. The neurotransmitters have changed, and the neurophysiology has a few more bells and whistles.
ADHD Medications And Receptor Sites
Let's make this simple, – er, let's try to make the basic pharmacology a bit more understandable. 😉 Best to start with the basics, and this article in Science Daily breaks down an interview with a neurophysiologist at Yale, Amy Arnsten PhD, who has been looking at alpha 2 adrenoreceptors for several years now.
I've heard Amy present this interesting material, and know it needs a bit of translation, – so I will simplify this brief note for you –
The real value to this new formulation:
- New brain information takes us beyond simply thinking about the synapse – into brain networks, systems and our new friend: ion channels
- Intuniv – This medication is not a stimulant
- Evidence Works: More interesting information about brain function arises from this fresh evidence – and appears to offer significant different possibilities for treatment with ADHD medications.
New Post
Heads up readers: I posted an even more recent, precise post on Intuniv for ADHD: Dosing Details – So do pop over there if you find this Intuniv discussion of interest. And do take a moment to review all the Intuniv posts here at CorePsych Blog. Several years have passed since this first post, and more understanding, more clinical experience provides more insight. Just type “Intuniv” in the SEARCH on CorePsych Blog.
One of the newest, important points is the relevance of glutamate neurotransmission with Intuniv.
Remember this main ADHD Medication point: Intuniv is great, works well often, but isn't for everybody. What Intuniv does do: on the one hand solves some previously unsolvable ADHD medication challenges – but on the other hand encourages even deeper insights for those ADHD presentations that fail to respond to any of these various ADHD medications.
cp
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My almost 10 year old started intuniv on fri and is exhausted. She’s like a zombie. She’s only 64 pounds and very petite. I adopted her from Russia when she was a baby. She’s on 1 mg and can barely get thru the day. I hate seeing her like this. I’ve given her 3 doses (thurs pm, fri pm and sat pm). Can I stop the med’s now or do I have to ween her off of them?
Joanie,
I never give straight medical advice to folks I have never seen and with this remark am not telling you what to do – but it is reasonable to say that it is safe to stop Intuniv or Tenex after 3 doses – and important that you quickly follow up w your doc to get on the next set of interventions.
Adopted kids from overseas, and this is a big generalization, often have serious metabolic issues, some with heavy metals, some with significant trace element imbalances, some with straight IgG issues not previously explored. I’m not making a diagnosis by telling you this, but am encouraging you to chase down those other possible causes should they arise, as it does sound, even on this small amount of clinical response, that metabolic issues with the possibility of refractory response to meds may occur. Best wishes!
cp
My adopted son was exposed to meth and alcohol prenatally.Myasthenia gravis is in his bio-mom’s family. He is smart, but has grip problems, writing is slow. He wa diagnosed with ADHD at age 8 and began Metylin with very positive results. Then he had slowed growth and anxiety. He then took ADDERAL and had auditory hallucinations and paranoia. So he was put on Strattera and said it made him feel better, but he began having chest pains. So, he was switched to the ITUNIV 4mg bedtime.
After 1yr his teacher says he is still very disorganized and not responsible., because he doesn’t get work completed or if he does, handwriting is poor. My son feels terrible and hates school now. He is almost 12 and goes to jr high next fall. —— He did nearly win both spelling B and geography B, which shows he is learning. Kids like him.
Now he has suddenly become a picky eater, yet he’s always loved to eat a variety of food. . He is getting sick more. He gets sad more.
As a baby he was on soy formula and does not like milk, but will eat cheese and yogurt and ice cream. He used to get red cheeks from chocolate.
He has less stamina than other kids, less coordinated, fear of heights with balance problems. He drps things often, forgets where things are. He reads well, but his eyes get tired and droopy.
I’m not sure what to do. He is generally healthy, except for more colds now. Could
Lyn
Quite simply, your guy absolutely needs testing – IgG, Trace elements, perhaps the Metametrix toxic elements, and quite possibly neurotransmitters. He clearly, from my own frame of reference, and from the work of many others who report these kinds of regressive challenges, he has metabolic problems, likely inherited, may have other genetic issues that cause failure of meds. Coordination, exhaustion all suggest a variety of possibilities from heavy metals to immunity issues.
cp
Dr. Parker – I have a 13-y-old son with extreme impulsivity issues. He does not metabolize stimulants (won’t get into all the details here- too long). He also has learning challenges and has been at a specialized school for attention/LD for 4 years. Unfortunately, his impulsivity has led to many bouts of teasing classmates this year and has had multiple suspensions etc. He is not teasing with the intent to bully. I read your entire book with extreme interest and need to followup on metabolic and neurotransmitter level testing. Unfortunately, I am unable to get all the specific testing details from your book and videos. Please tell me exactly what lab tests to specify re: food sensitivities, IgA, neurotransmitter levels, others?? from the two labs you recommend in the book Appendix. We need to get our son help asap, before he is no longer allowed to attend his school. Thank you.
Pamela,
Give Desiree a call today and set up a time for a Brief Chat, outlined on the Services page, no charge – and I can best give you the details that way.
cp
Dr Parker, I just read the email from Pamela (Feb 4 2013) and wow this describes my grandson to a t. He is on Tenex, Zoloft, and a non stimulant ADHD drug. This year he is overly impulsive and very remorse after doing something wrong at school. Today he was suspended. He sees a Psychologist bi-weekly and has made leaps and bounds at his special school. Yet if he continues his impulsive behavior, he will not be able to attend. What can we do???
Sue,
Could be many reasons for acting out – including the possibility of tenex being mixed with Intuniv [the same drug], not a good thing, as it would send him out the top. What are the meds he is on, talk to your doc if you think the meds aren’t right – if your doc doesn’t know there’s nothing he/she can do.
cp
My 3yr daughter was just diagnosised with ADHD. They were hesitant to start her on medication because of her age, however, she is not retaining information. We cannot get her to learn her colors or shapes. They started her on 1mg of Tenex split into 2 separate doses AM and around 1pm. She has to not even been on the medication for a week and she is exhausted. She can barely stay awake long enough to play or eat before her next dose. I am kind of unsure of medication and my 3 year old, however, I want the best for her learning and path in life.
Connie, 3 yo kids always need many more questions on the metabolic side. So many that age have immunity issues [see the ADHD Immunity Gut and Brain playlist on my site at YouTube.
We could review details by phone if you wish to schedule a meeting at Services. This will be more than a 15 min chat, sorry 🙁
cp
Hello,
My son is 8, and overall doing well but his growth is a concern. At 2he was at the 90th percentile for height. At 3 he stopped growing for almost a year. At this time he started showing severe symptoms of ADHD and also ASD. At 5 he started INTUNIV but after 2days began hallucinating. I think it may have been because of a natural supplement which included GABA, but we stopped and went to Tenex, increasing very slowly. He responded very, very well and also his height went from 30th percentile to 40th. I noticed every time we increased medicine he had a little growth spurt. As he has improved and matured we have increased less often – and he is now at the 25th percentile. It seems Guanfacine helps to make GABA more available, and GABA is tied to growth. So maybe this is why he had growth spurts when medicine increased? He is doing well now with Tenex 3/4 pill in AM, .5 mg at noon and 1mg at dinner. The only issue is that he can’t get to sleep and only sleeps about 7 hours a night. Would GABA before bed help with sleep and maybe growth? He does take melatonin on occassion but it only helps to fall asleep – not stay asleep.
laure,
Your guy very likely has much more going on below decks that’s encouraging the ADHD symptom picture up above. The growth, thriving issues are almost always malabsorption related, often associated with IgG food allergies. I strongly suggest a careful, qualitative not quantitative, food analysis to assess the likely need for a serious diet change. My CorePsych site has just been rebuilt so some of the posts are slowly finding their way back on the scene.. I have numerous posts here on IgG just type it into the SEARCH above and start reading. The only GABA/growth connection I could guess is that the GABA, an inhibitory neurotransmitter, has helped calm immune reactions on a cognitive level thus freeing your guy up to eating better and less reaction to foods. This last comment is total guesswork, and from my way of thinking, only idle speculation. The truth resides with improved evidence.
Here’s a video on picky eating that might also prove helpful:
http://www.corepsych.com/2012/11/adhd-insights-picky-eaters-outed-video/
Hi Suzette,
If I might pipe in here….Dr. Parker has just given you invaluable advice. Please do not delay in delving deeper into these issues, as he suggests.
I’ve seen too many people rely on mainstream medical advice, despite problems such as you describe. They do not get better on their own. And they often get worse.
As Dr. Parker says, once your child gets older, it becomes that much more difficult to follow through with what he recommends. It might sound like more “work” but nothing compared to dealing with the fallout later in your child’s life.
Good luck!
Gina Pera
Thanks Gina,
The kids can turn around so much faster if folks simply jump directly on treatment failure and dig deeper for improved evidence.
cp
Indeed!
My daughter is 9 years old and is now on her 2nd week on Intuniv. She had 1mg the first week and 2mg this week. She also is on 40 mg of Ritalin SR and regular Ritalin 5 mg after school. When we added the Intuniv to the stimulant she had concerning reactions. The dr had her take the Intuniv with the Ritalin in the afternoon and she had a very sever anxiety attack. So bad I almost took her to the ER. So, I dropped the Ritalin in the pm. Then she became totally sedated with the Ritalin 40mg in the am, so I dropped it to 20 mg in the am and was okay for about three days and then had a lot of anxiety and mean aggressive moods. So, I dropped the Ritalin altogether. Today went to 1mg in the am of Intuniv and 2mg in the pm. She likes how she feels on the Intuniv and begged me to take her off the Ritalin. I’m sure I need to be more patient to see how she does with no stimulant and going to 3 or 4 mg on Intuniv. She does weigh about 187 lbs, so weight gain is an issue and dosing is an issue.
WHen we first tried a stimulant in August the dr put her on 20 mg of Ritalin SR and it was a dream! After one week it stopped working so well, so he increased it to 40mg. Worked like a dream and would have stayed on it except for sever stomach pains, tics, visual and auditory hallucinations, and anxiety. She was making friends for the first time, getting great marks at school and very well behaved at home too. She was very happy. Due to the side effects we tried Vyvance and it was terrible, worse on focus, worse tics, terrible hallucinations, so we tried Ritalin LA, not good either, tried short acting Ritalin, it was about like SR, but worse stomach pain. Tried many things for stomach pain.
I wonder if she will need a stimulant with the Intuniv, my thoughts are that she will need a little and what one works well with Intuniv. I see you really support Vyvance but it did not work well for her. I am feeling lost in this ADHD maze.
thank you! Suzette
Suzette,
Yes, I do favor Vyvanse – if it works! If it doesn’t, I agree with you and your doc, I move on. Your daughter has more going on biomedically than simply ADHD. The problems with stomach pain, weight gain at her age, refractory response to stim meds, constant med adjustments [this latter point: “Roving Therapeutic Window” discussed in detail in my book New ADHD Medication Rules [ http://www.bit.ly/rulesbooks ] all conspire to encourage IgG testing for starters, and perhaps more testing down the road. I have several videos on IgG testing on the drcharlesparker YouTube channel.
Strongly suggest measuring transit time, and really working her up biomedically before adolescence – as after puberty her self esteem and failures become even more intolerable, and often more unmanageable.
Intuniv worked because it hits a different neurotransmitter, Vyvanse reactions like that in the context of MPH products working well often imply underlying metabolic imbalances.
When you do IgG do the specific “qualitative” rather than the “quantitative” which tells you very little to nothing.
cp
My son was diagnosed with Inattentive ADD two years ago.. We have tried several medications with little success. We started with Concerta which seem to make him talk in circles, then moved to Adderall which was a little better but started to introduce some anxiety and lack of appetite. The Dr then added Strattera which at one point seemed to be the magic bullet, however when we removed the Adderall we say no benefit and then tried adding back the Adderall only to find marginal success. He is now on 30mg of Vyvanse and 15mg of Cipralex (to offset the anxiety).. this again is marginal at best. We are now trying Intuniv but wondering how to make the move? ie do we drop the Cipralex? I am hoping so but not sure how to titrate? You mentioned phone consults and am interested to here more as to how this may work.
Thanks!
My 10-year-old son was diagnosed with ADHD in Dec. 2011. We started Vyvanse at 20 mg and with no reaction after 2 weeks increased the dose to 30 mg. My son became more irritable and no other benefit came about and we switched to Focalin, 5 mg. We did that for a week and he was irritable, angry at school, acting out, basically not acting like himself. We just started Intuniv last night and my son came home from school crying and telling me he doesn’t think he’s ever going to feel like himself again with all the med trials. I gave him another dose this evening because I can’t talk to the dr. until the morning, but I’m wondering if this is a normal reaction to Intuniv when a patient begins taking it. Thank you for any helpful comments.
Lisa,
When anyone, child or adult, fails all three of those subsets of meds, MPH, AMP and Alpha -2 Agonist, the absolutely next best intervention is a careful search for metabolic challenges, immune dysfunction, food issues, or other metabolic impediments. Even a person incorrectly diagnosed, without ADHD, will not experience those challenges. Your doc did a great job of careful titration, thus leaving the problem back on his metabolic landscape.
A key clinical question: is he pale, with dark circles under his eyes, and a picky eater? Highly likely.
cp
Melissa,
The edge for several reasons is with Intuniv – this is an example of the reductionistic thinking so characteristic of managed care… stuffing the ballot box with papers on generics for economic reasons. Sure Intuniv costs a bit more, but compliance and response are often decidedly much better.
On the other hand, I suggest you dance with and embrace the devil of unmanaged care. You don’t have a choice, and bottom line your son will suffer less.
In the meantime recognize that he likely suffers with a metabolic problem, the tics can often be corrected with some time and energy – and money – spent on neurotransmitter measurements.
cp
My son was on 1mg guanfacine am only as twice a day irritated him (with other meds, bp, anxiety, PDD dx) so am to get thru school. He was switched to 1 mg intunive 2 weeks ago and his rage has escalated along with what seems to be more depression. We increased his carbamazepine as it helped with rage previously but all bets are off now. We are torn between increasing intunive to 2nd or going back to the am only dose of guanfacine. Any advice? I’ve always felt the Tenex and intunive irritate him but without it he gets in trouble at school.
CNC,
Interestingly when a person gets to the Intuniv it often becomes a clearing house for things-that-didn’t-work-well. And then, if they have trouble with Intuniv, it seems like you are out of options.
This is when we call in the biomedical assessments… when nothing is working as expected, and they have failed good treatments with well trained docs…then the entire team needs more info. Type in igG to the SEARCH box on this blog, and go to the /neuroscience page for more details on specific testing.
We offer this testing internationally, and understand how to mix it with the meds in place. Comprehensive approaches with verifiable investigations – turn up new options almost every time.
cp
Abigayle,
Take a look at neurotransmitter testing wherever you are. Horrible reactions to Intuniv in addition to the dopaminergic stims… in my opinion, must be chased down for the specific imbalances. And don’t forget the imperative IgG. Just SEARCH IgG here and you will get an eyeful of data and links,
cp
Short answer, yes, absolutely – and there is no comparison, I just don’t have those numbers on the tip of my forebrain. Strattera doesn’t come near Intuniv and Intuniv does come close to AMP and MPH, not quite, but close in efficacy/outcome studies.
cp
Cami
An inexpensive way to get far more detail is to read my book, as it will give you a better background for your concerns and you won’t be so much in the dark.
You and your doc will be fine, as will your girl, with either of the choices: intuniv + no adderall, or Intuniv + adderall. Trial is about the only way to asses that outcome.
I do think in retrospect, if she were my patient, I would guess that I simply went too high on that increase in dose and would come back down to 15 2x/day as a simple starter with your doc’s approval.
cp
Jenn,
Sorry to be so behind, but yes! Intuniv has no negative interactions with most of the antidepressants except Prozac, Paxil, and Luvox – all of which have reactions with Cyp450 3A4. Suggest you two talk it over and give it a shot – if you bounce on that combo stay tuned here for more posts coming out on Intuniv: when it doesn’t work and what to do.
cp
Hello,
I was wondering if anyone had any comparisons in the effectiveness of Intuniv vs Strattera. My doctor told me I could try either one of these in addition to my stimulant and I’m not sure which would be best. I have ADHD with issues with hyperactivity and focus/inattention.
Thanks
My daughter was diagnosed with ADHD back in April of this year. She was put on 10mg of Adderall twice a day. Over the last few months I noticed that the medicine wasn’t working anymore. The doc put her on 20mg twice a day and she did NOT have a good reaction. But not taking the 10mg twice a day, makes is very difficult for her at school. I started looking to Intuniv. At first I really liked what I saw. Especially since my daughter does have tics, did loose weight and is having problems going to sleep at night after she started Adderall. But after reading different blogs and stories, I am not sure what to do. Do I suggest that she take Intuniv with the Adderall or does she need to try Intuniv by itself? Does she need to try something completely different? I am so confused. I want to help her so bad, but I don’t know a whole lot about ADHD. It didn’t realise that most kids need a couple of medications for ADHD. All I know is that she can’t handle a higher dose of Adderall and really needs something to help her stay focused and less distracted.
Dr Parker,
I am a 39 year old female under the care of a good psychiatrist. I have generalized anxiety and some depression-both of which are pretty well controlled with Pristiq. I also have ADHD-Inattentive type. The problem is that I don’t tolerate stimulants as well as I used to. They now make me very anxious. Last week, the doctor prescribed Intuniv for me, thinking maybe it would help me better tolerate the stimulant. Have you had any experience adding Intuniv to a stimulant in such a situation? I hope to resolve this soon because I have returned to school to finish my degree. Thank you in advance for any insight you can give.
My son is 9 y.o. . Was on Focalin XR, Vivanse, and now on Strattera 40mg daily along with Seraquol for 2 weeks already but I see no change in his focusing in school at all except less jittery. He always has had trouble staying asleep, always toss and turns, very troublesome sleep and blood-shot eyes everyday because of poor sleep. His psychiatrist gave seraquol 25mg at bedtime for anti-anxiety but it does not help at all. I think if we can manage his sleep, he will have better result with ADHD meds which so far not helpful much at all.
Another psych doc just gave another px for Tenex at night ( my son does have tics) to take with Vyvanse 30mg in AM.
Would you agree with this trial???
Thanks,
Henna,
Sorry to be so completely late in this reply… still getting squared away with the Disqus comment system… must have caught your thot waves as just did a cinch cast on this very topic this AM – It’s over here at CorePsych Blog: http://icin.ch/4U2Tc
cp
Alb,
It’s safe, but when these additional symptoms arise I always take the investigation further. In a few years everyone will dig deeper, but for now few chase down those details – especially food sensitivities. Those with developmental issues and rage issues looking like mood disorder and treated with atypicals like Geodon will all be tested in the future… there is an abundance of IgG issues out there… seen it in my office, missed it for years, now more careful with any of these situation as you see with your guy.
cp
Ks,
No interactions with Tenex and Focalin, so no worries there. No reason to wait. My quick take, sorry to repeat myself, but this child needs more of a workup, specific imbalances can then be directly addressed.
cp
Two-
That’s a hard one without considerably more information… the short answer is: could be, – but ‘could be’ many things. Most importantly in a presentation like this: the absolute necessity of IgG testing… you will not know where you are without that next step.
cp
I my son who is 13 is currently on 20mg of Focalin XR first thing in the morning the another 20mg at 1:00pm to help him make it though school. He then takes 40mg of Geodon around 6:00pm and then 4mg of intuniv. We were first told that he was ADD when he was 6 and he was diagnosed as being on the low end of the Asperger scale when he was 12. He was given the Geodon to help with his anger to the most part it has helped. He complains every night that he has a headache with these combination of drugs what is safe to give him for the headaches?
When a child has a toxic reaction to Tenex, ie.. mouth sores from dyspepsia, headaches, severe weight gain in a short time, can it have lasting affects after being taken off of it? My child was on it and it was working wounderfully, but after being forced to take her off of it she is more aggressive and angry. I was wondering if this is a possible side affect from being on the meidcation and how long would it last? We waited two weeks before using focalyn but could this have interacted with the Tenex?
Thank You,
Kenny
My 7 year old son has been taking Intuniv 3 mg for many months. However, lately, he seems very moody, angry and unhappy. I have done some research and it doesn’t sound like bipolar but maybe depression. He was diagnosed with ADHD and ODD at 4. We have tried Focalin, Adderral, Vvanyse, Daytrana, Strattera. Some have worked but eventually stopped. My son was doing pretty well on Intuniv – it didn’t control his impulsivity as much as I would have liked but he was still sweet and loving. Now he is just angry and unpleasant, to the point where my husband and I are tip toeing around his mood. Do you think adding an antidepressant would be beneficial?
Is there going to be more studies of non stimulants for adults adhd. Can Intuniv be used for adults with adhd. Will there be non stimulant used for adults adhd in few years. Vyvanse has a smooth on feeling.
Darrius,
Intuniv is undergoing studies with adults now, and anecdotally has an excellent application in adults who show refractory excitatory responses to the dopaminergic stimulants. Specific excellent responses with heretofore less treatable cognitive anxiety.
cp
My 6 year old son had just gotten off of Focalin and got put on Intuniv 1mg. Ever since he started taking Intuniv he has been having bad dreams every night for the past 3 days now. Is that suppose to happen?
Chrisanna
Chrisanna,
Dreams can arise downstream from Intuniv, best to go more slowly with the dose, confirmed thru your doc, and see if he has less problems. Some can’t take Intuniv because of the excitatory aspect associated with the glutamate rise.
cp
Hi there,
I’m having a hard time finding the information I need in order to make an educated decision about Intuniv vs. (generic Tenex) Guanfacine. I have two boys both with ADHD that had tried Guanfacine in the past, but I took them off of it because it made them really irritable and we weren’t seeing any significant changes in their behaviors. However, now after learning about Intuniv I see that the boys were probably not taking a high enough dose of the Guanfacine before (only 1 mg/day) which is why we probably weren’t seeing any behavior improvements. Despite my hesitation because of the irritability in the past, the boys are now taking Intuniv because their doctor says that the chemistry is different from Guanfacine, and I have noticed that they are not having the same irritability symptoms as before. So, here is my dilemma…I’m starting to see some improvements on the Intuniv (still waiting a few more weeks for it to be fully effective), but the problem is that it is VERY expensive, especially having both boys taking it. What I am wondering is, if I were to switch them back to the generic, but increase the dose to the same dose they are currently taking of the Intuniv, do you think the irritability would come back?? I guess what I’m really asking is do you feel there is such a difference in the chemistry of Intuniv or Guanfacine where one would cause irritability, but the other wouldn’t?? I hope that makes sense. I really want my boys to continue their current med, but it is just SO expensive, and I’m hoping that I could go back to the Guanfacine but still get the same results as with Intuniv.
Any guidance at all in this area would be really appreciated. Thank you!
Jolie,
The benefit with the Intuniv is largely predicated on the release process. Just as with Vyvanse Shire [in its growing ‘release wisdom’] created an excellent release process that takes out the significant peaks and valleys. With your guys it’s likely that the release is the deal when comparing the Intuniv to Tenex, as that release/metabolism process does make the difference – so much so that they got the FDA approval for ADHD, whilst Tenex has no such approval.
It’s worth a try going up on the Tenex but the strong possibility is a more challenging side effect profile… a primary reason for developing the time release in the first place.
Best wishes with your guys!
cp
hi, read your concern about tics and behavior… my childs dr just prescribed Risperdol and the other one Prozac. I decided that since she was 4 to try a diet change I had been reading about… Fed up w ADHD books and others by Sue Dengate have really made changes in my home…. I have raised 3 kids to adulthood and never would have believed it until now Im seeing raising my gr kids.. Im thinkin w didnt have all of the additives on food and even play dough and cheap dollar store toys back then… no meds now except for an occasional diet mistake… so far soo good.. read her stuff on tics, anxiety and behavior.. nothing to lose by trying…. laurie
Laurie,
True most of the tics are downstream from unidentified immune dysregulations. Changing the diet can often help.
cp
Charles- the immune dysfunction is a really interesting issue. My (then)9 year old daughter developed 3 food allergies in quick succession in the year that her ADHD slipped out of control.
My reading of the situation ( as a family physician who has ADHD and also has a strong interest in mind-body medicine) is that the stresses involved in living with ADHD will obviously cause chronic sympathetic overactivation. Part of that sympathetic overactivation is a diversion of blood flow from gut to muscle and probable increased permeability of the gut to large molecules- exciting a range of food sensitivities. Then of course there are the effects on the standing cortisol levels of a chronic stress response.
Andrew,
Well said! The point that I am finding in my practice is that the immune system dysregulations almost always precede the marked deterioration. Folks can go on for years with just a bit of pre-frontal cortical slowing, but when the inflammatory downstream effect of significant immune reaction couples, as you point out, with stress – then is when they come into the office. Most can make adjustments over time, but the tipping point is the coalescence of several challenges at once.
Then the resolution is impossible with identifying and treating only one aspect of the problem – 3 legged stools just don’t work on 2 legs.
cp
So, are you saying that the ‘peaks and valleys’ of the short-acting generic is likely the cause of irritability as a side effect, and that the Intuniv, having a timed release would help to eliminate the coming-down effects of the generic?
:0 ) Jolie
Jolie,
Possibly, not sure – often the longer acting does smooth the volatility out.
cp
Dr. Parker,
I have a 6 yr old daughter who will be 7 in Dec. 2010. She was diagnosed with ADHD & mild ODD in March of 2010. We tried Adderrall which was not well tolerated by her and then I told my pediatrician about Intuniv. She titrated slowly to 2mg where she has remained for approx. 8 mos. In the beginning she slept all the time. Sometimes 14-16 hrs a day. She slowly came out of that and had severe mood problems during the first few months so her pdoc added in Prozac 10mg and it has worked like a dream. She is a sweet, loving, engaging child & is doing phenomenal at school. The only problem is she has put on a tremendous amount of weight in the 8 mos since she started the Intuniv. I’m not sure how because she doesn’t overeat & I am extremely healthy in my eating & I make sure she eats lots of fresh, organic fruits & veggies. It’s almost as if her metabolism has slowed down. She has gained 14 lbs total and her pediatrician is very concerned and wants to switch out her meds, but, doesn’t know what to put her on now. I sometimes feel like I am the doc & having to suggest to her pdoc what to do next. Do you have any suggestions for a good combo of drugs? I would like to leave her on her current mix and possible add in Vyvanse to pick up the lag in the afternoon. Do you have any thoughts on combining Intuniv, Prozac & possibly Vyvanse?
Thank you,
Sheryl
Sheryl,
Take a look at this CorePsych Blog post on Intuniv and Drug Interactions. Peds often use Prozac because of a few studies with children, and while other antidepressants are not approved by the FDA, making them “off label,” they often work better with fewer side effects. Prozac can easily cause the Intuniv to accumulate.
My short rec on that change would be either low dose Celexa or Lexapro depending on what your insurance co agreed to – they are now running the treatment show. [5mg Celexa in the AM after breakfast to start and titrate up to resolve depression. Do not use Prozac with Vyvanse ever see this CorePsych Blog post on Amphetamines and Prozac.
cp
Dr. Parker,
Hi, I have a son, 15 years old, weighs 115 pounds, 5 feet 11 inches. Oh, and he has CP and some moderate issues with attention, processing and impulsivity. We have tried clonidine, made him too sleepy. We started on vyvanse 20mg about a week ago, he didn’t have ANY interest in eating, playing or anything EXCEPT what he was focused on at the time. He was extremely focused on his computer and didn’t want to play or eat at all. I ended up feeding him. However, his behavior at school was better. He is never “bad” at school, just can’t focus enough to do his skills work, jobs, etc… so today we went back to the pediatrician and he suggested before we threw the medicine out the window to mix it with water and either give him half (10mg) or even 1/4 of the capsule (5mg). My son seemed “hyper focused”. Keeping in mind, he is not ADHD or OCD, he had a stroke in utero and these are “behaviors” he displays due to this. He is now in High school and there are more expectations from the teacher, ie: certain jobs, certain independence etc… thank you so much and I am very interested in what you have to say, suggest. Jamie
Jamie,
Completely agree with your informed pediatrician – he is suggesting a lower, more careful titration strategy for metabolically compromised individuals we have been suggesting since Vyvanse first came out years ago. – Only point I would add is that breakfast must come first, and it must be protein – with specifics on this CorePsych Breakfast How-To post from almost 4 yrs ago.
cp
Hi Dr. Parker,
My 11 year old son is diagnosed with ADHD. He is anxious and has tics. Because his tics, though comparatively mild, began to increase in severity over the years and were upsetting to him, we decided it was time to address them pharmacologically. Prior to changing his medication, he was taking Concerta 36 mg. daily. For the past 6 weeks, he has been taking 18 mg. of Concerta and .5 mg of Guanfacine twice daily. While his tics have decreased noticably, his anxiety level has sky rocketed. He was sleeping better initially after starting the Guanfacine, but now his insomnia has increased in frequency (almost every night) and his thinking has become more obsessive (particularly with regard to things that he’s anxious about, ie. frightening images seen in a commercial for a scary movie). Is it possible that this increase in his anxiety level, difficulty sleeping and obsessiveness is a side effect of the Guanfacine? I haven’t seen these side-effects listed anywhere, but I’m suspicious. Any help you can offer would be really appreciated.
Deborah
Deborah,
I do hate to sound cookie cutter, but these comments are not cookie cutter in treatment, but now standardized in my practice for every set of complaints such as yours: Get further testing – I suggest neuroscience. His multiple neurotransmitters are imbalanced and current psych meds only address symptoms not the underlying imbalances. Measure those and correct those. More info at this CorePsych NeuroScience page.
Yes tenex and Intuniv can both cause agitation when glutamate levels are already increased, often secondary to immune dysregulation often in the GI tract.
cp
Wow! I love what I am reading! My son Ike just turned 7yrs old and was diaongoised Autsic at 18mo. For the next 1 ys 1/2 non speach, hand flapping, head butting, crying/ screaming for hours…the list goes on. We have had a lot of therepy. I mean a lot. Limited sugar nothing over 11 grms, policed the RED dyes and NO ARTIFICAL SURGAR ANYTHING!!! By the grace of God Ike is now high functioning.
Barbara,
Amazing in the ASD folks how the metabolic issues abound, and how the allergies figure in so repeatedly. An excellent book on these matters is by Dr Ken Bock – on Autism, Asthma, ADHD and Allergies. Sounds like you are right on track!
cp
Hi Dr. P.
I clicked on that link to Dr. Bock’s book, and saw this review — is it from you?
“Bock is an excellent speaker and writes very convincingly about ADHD and the immune system, and how it all connects to Autism. The only problem with his remarks is is obvious bias against useful psych meds. If you can set aside those rather biased remarks you will find good information here about immune dysfunction and ADHD. Bock is quite correct in the observation that stimulant meds should be used very very carefully with children and adults who suffer with metabolic/immune challenges.”
Gina,
Yes, those are my remarks, pub on my aStore. Bock is a wonderful clinician with many deep, useful observations, – but has that functional vs traditional bug going on which softens his otherwise exceedingly interesting message. With ADHD and with Autism categorical perspectives encourage imprecise solutions. Did you have an opportunity to read it?
cp
Well, Dr. P., they can’t all be great synthethizers like you. 😉
g
Thanks Gina,
So much new information to wrap around – we need to work more together!
cp
MY 3 YR old was just started on guanfacne,, for ADHD I cut to 1/2 dose after the heavily drugged state the first day… is much better! still a bit crabby at times but nothing like before,,, heres the question… why do I have to give it on weekends and days she doesnt have to “attend” I am a fan of the least amt of DRUG TO TO THE WORK NEEDED…does she have to have a level of it at all times or what? If so, then why do I read on here that people are giving their kids 1/2 in am an 1/2 in eves… others say bedtime mine reads qam… whats best… whats least? and the reasoning behind each… would be good to know.. anyone out there? ideas please… and thanks….
Laurie,
In your note you weren’t specific about the med or dosage: Is it Tenex 1mg? So he is taking 0.5 mg? The Tenex DOE is only about 4 hr, so you and your doc will have to discuss those details. The same with weekends – not mandatory, but often preferred to cover on the weekends, and to prevent the up and down effect of starting and stopping. On the other hand, he is 3 yo, and if he doesn’t need it, not a problem. Thousands don’t take the meds as prescribed… it’s just a bad habit to start – as in the blink of an eye he will be in first grade with an entirely different set of variables.
cp
Hi Dr. Parker. My son who is 5 yrs old, was recently diagnosed with ADHD. His dr started him on Clonidine 1/4 mg once at night, then moved to once in the am, and once before bed, and then finally once in the am, once in the middle of the day, and once at bedtime. He was doing somewhat better on the Clonidine, however, was overly droswy, and his anxiety was still very present. His dr switched him to Intuniv, 1 mg in the am, and 1/4 Clonidine at bedtime, approx 2 wks ago. We have definitely noticed a difference in him, without the excessive sleepiness. His anxiety has improved some, and his ability to actually sit and play with one set of toys, or hold interest in one activity for more than a few mins is great. However, he absolutely will not swallow the med. I basically have to hold him down and get it down his throat. It takes us sometimes as much as an hr in the am to get him to take the med. He is also showing some signs of increased impulsivity within the last few days, likely his dose needs to be increased. We returned to his dr today and I explained the problem with the med. His dr wrote rx for reg Tenex, 1 mg, to start out with am use only and then move up to another 1 mg in the afternoon. He remains on the 1/4 Clonidine at bedtime. My question is, will he have such good results with the reg Tenex that he was having on the Intuniv? If the Tenex does not work like we hope, will my son be able to return to the same results from the Intuniv as he is now, if we decide to try to give that again?
Thank you,
Kristin
Kristin,
If he could take tenex, is he breaking it up or crushing it? Know that you can break Intuniv x1 = 1/2 and still have pretty good delivery if the tab size is an issue. If he has to have it crushed, then you really don’t have a choice. Tenex is helpful but doesn’t last like Intuniv and requires more frequent dosing.
Some parents have had good success with practicing with small tasty items before going to the meds. And, yes, an hour is too much from a psych point of view… not worth the trauma on everyone.
cp
Hi Dr. Parker, thank you for getting back with me. We began giving the guanfacine on Friday, and as I had feared, he is not having the same results as he was having on the Intuniv. He is chewing the guanfacine in the am when we give it to him. He is having quite a few near meltdowns during the day, and has been taking at least a 2 hr nap, if not longer, and that is not typical of him. I am contemplating giving him the Intuniv tomorrow in the am, but wanted to know from you if you thought maybe these are side effects that may improve, or if this is not a typical reaction? I personally think he needs to try a low dose of Adderall, but he does have a lot of anxiety, especially in social situations, so we have been reluctant to do this. Is there any other medication that comes to mind with you that may be worth trying for my son?
Thank you,
Kristin
Kristin,
Adderall or Vyvanse might be very helpful for anxiety, – more often than not it helps. But if the guy is having problems with meds in general, none of these might prove right. Only time will tell and some care. As I have regularly posted: the best solution to the conundrum of not-working-meds is a better appreciation of the neurotransmitters and the metabolic background noise in the first place.
cp
Hi Dr. Parker. What are your thoughts on Wellbutrin for ADHD treatment in children (5 yrs old to be specific)? Child does exhibit some anxiety and nervousness as well. Guanfacine did not work so well, my son exhibited increased studdering, social withdrawal, lack of motivation and extreme sedation while on this. Any thoughts are appreciated. Our dr has recently put him on Celex to address the anxiety and nervousness. Since he’s been off the guanfacine, he’s extremely happy again which is great, but his hyperactivity, impulsivity, not listening, not following directions, etc. are thru the roof. This is everywhere, home, school, etc. I know the Celex will take some time to work but he needs an ADHD med. Just looking for the best route. I’m pretty sure he needs a stimulant, but he did try a few days of Ritalin approx 8 mths ago and it did produce some tics with his hands, pulling at his ear, etc. They did seem to get better each day, however, his anxiety was so extreme that I could not continue the Ritalin. It could have just been to high of a dosage, or just not the right med, not really sure. He was not seeing a psych dr yet at this point so I did not cont until we were actually seen appropriately. I myself take Adderall for adult ADHD. This works fairly well for me. I think my son may benefit from a low dose of Adderall XR (I need to be able to break this up as he will not swallow a pill). But, I have read some positive findings with Wellbutrin for tx of ADHD and wanted to get your opinion on it?
Thank you in advance!!
Kristin
Kristin,
Wellbutrin is not on the top of my list, in fact It is quite low, even tho some reports have suggested it might be helpful. I quite agree with you on the AMP side of things, and yes, Adderall could be helpful, but so could a very low dose of Vyvanse.
My best advice on these young folks: look at immune system dysfunction every time. Stomach and bowel, then skin and respiratory – IgE testing done by most allergists doesn’t cut the mustard. I’ll be writing a post soon on the immunity details.
cp
Just piping in to say LISTEN TO DR. PARKER! 😉
“Meds roulette” is sometimes part of the necessary challenge in treating complex cases of ADHD, but without a methodology and without identifying any underlying issues GI-immune conditions, as Dr. Parker points out, kids and adults with ADHD can feel more like a “pin the tail on the donkey” than a patient who is receiving care driven by careful protocols.
Also, lest we forget, the wrong medication can create side effects that linger even after that medication is stopped. Then that side effect is treated as a symptom, treated with another med, and on and on the mystery continues.
Please read Dr. Parker’s book, consider the NeuroScience Inc testing through Dr. Parker, and establish a strong basis of data from which to decide upon treatment strategies. It’s so very important!!
thanks g, you are so on it! It’s a pleasure to be out here with you!
cp
Tiffany-
Talk to your doc, but two issues might be at play:
1. Give it in the AM
2. Keep the dose down until she is more adjusted to the med in the first place.
cp
Dr. Parker,
I have an 8 year old son with a 22q13.3 deletion(Phalen/McDermid Syndrome) and arachnoid cyst in the left temporal lobe. His Nuero has him on lamicatal 125mg twice a day and behavior doc on Intuniv-2mg a day. There has been good results for his behavior but still not interest in school work. Should other testing be done or need more time on meds? He has been on for a few months for lamictal and 6 weeks for Intuniv.
I welcome any advice you have.
Thank You,
Caren Ferrari
Caren
See if your doc will approve a very small dose of Vyvanse with the Intuniv [1/2-1/4 of a 20 mg to start].
cp
Dr. Parker, Our son has been on Vyvanse and supplements for months now. He just told us he feels that he has become angry , non trusting of people and we have seen some tics . Could this be related to the medication ?
Kimberly,
Tics can occur downstream of any stimulants, and have seen them occasionally downstream from Intuniv, although the guanfacine molecule has been indicated to treat tic disorder for years.
cp
Dr. Parker,
My 11 year old son takes Focalin and Intuniv for ADHD and Aspergers and it works incredibly well for him. But I am getting mixed messages on whether we can split the Intuniv in half or if that will mess up the extended release. The reason I ask is we are going up in dose and we have a bunch of old ones I’d rather split and combine, and save the money before we fill the new prescription. What do you think? And I love your blog, BTW, thank you!
Audrey,
Off label: but at a recent national conference one of the primary researchers slipped and said that he broke Intuniv in 1/2 whilst titrating upward.
My office experience: 1/2 is no problem with the delivery of effective doses, crushing it up is absolutely not recommended.
cp
Thank you for your input. He metabolizes the stuff so fast, we’ve changed dose three times in seven months! I don’t know how long we can keep this up, but for now, Intuniv (and Tenex when we were using it) is a wonderful addition for him.
Audrey,
He should find a plateau, if not you are missing something and treating only the symptoms will be insufficient to correct the underlying biological challenge. Tachyphylaxis with these meds almost always means metabolic disarray.
cp
Me again here. We are now up to 6 mg Intuniv (too much according to the manufacturer) and its obvious to me that his metabolism is messed up if he keeps going up as quickly as he has. What can we do about this? The Intuniv has made him so much happier and more social, not to mention a much better sleeper…. and we don’t want to give it up (he’s ADHD and probably a bit Aspergers).
FYI on the sleep thing, we use Melatonin when needed, but he works up a tolerance to that too (more slowly) so we don’t like to use it too often. The Intuniv has been a God-send for his sleep….
Audrey
Audrey,
As you have recognized, metabolic issues prevail and absolutely need further evaluation and attention. See this neuroscience page for multiple recommendations for further inquiry. We provide consults and lab evaluations long distance, but if you are anywhere within travel distance to our Va Beach office I could be more specific with an interview and with med follow up.
cp
My son is 16 and has been on about 10 different medications for ADHD over the years. They work for a while than nothing. He was on 70mg of Adderal xr which was working well and our Dr put him on Intuniv because he thought it would give even better results. We started at 1mg and worked our way up to 4 mg over a month. I have to say he is sleeping at night (which he hasn’t done EVER and when I say EVER I mean that) since birth he has had insomnia. However through the day he is so hyper that its hard to deal with. And on top of that he has gained 50lbs since Nov 2009 and since its May 2010 thats crazy. He is about 5 11 and 190 lbs. He has always been thin so it was nice to see him gain a little but this is nuts. And with all that like I said he is HYPER all day. I have been looking into him taking GABA 750mg and Omega 3 daily and we are hoping for success.
Melissa,
Your guy is more complicated than a simple note on a blog. Sounds like he may have some metabolic challenges? Did you stop the Adderall? Have you tried Vyvanse? The combinations work and no drug interactions occur with other stimulants based on metabolic pathways.
More info is needed there – a more careful review. And you can get very specific answers on the GABA question by looking at the Neuroscience page here.
cp
my son Elijah is 5yrs and started guanfacine 1mg b.i.d he seemed fine at first but now hes always crying and pale. Is this a normal side affect? Should I keep him on this medication or switch or just stop altogether? He was so hyper before and his doc said he was adhd, but now its like he isn’t the same kid. I need an opinion. Thanks
Sarah,
Do get him back to your doc and look at trying a different med, perhaps a stimulant, and no – that is not a typical reaction.
cp
Dear Dr. Parker,
How would I go about getting the NT testing done? The doctor we use doesn’t believe in the value of this testing and doesn’t know much about it. How can the tests be ordered? I gave my son the Zoloft at bedtime last night before reading your response and he seemed to sleep fine, but woke up a bit earlier than usual for him. At least there were no headaches or other complaints…he seems fine this morning. I’m hoping that the combination of Zoloft and Intuniv will tackle the anger and frustration issue, but I would be curious at the findings of the NT testing.
Thanks again,
Gail K.
Gail,
The NT testing is easy to do, only a urine on a Sat AM, after the first one is flushed, and nothing by mouth – details in the kit. We can do this testing long distance, details coming offline.
cp
Hi Dr. Parker can you send me the same details about my son getting NT testing done ? Thanks, Ricky.
Ricky,
Just call Sarah over on Services on the nav bar of CorePsych Blog. Look forward to chatting.
cp
When my son was 2 he was diagnosed with as hypersensitive. He would not touch grass, sand, playdough, rubber, etc. At age 4 1/2 he was diagnosed with ADHD and some tics. With stimulants came verbal tics (humming & throat clearing) and physical tics (straightens his eyelashes ((not pulls)), picking at bellybutton and lip, facial stretching, head roll, eyesquinting) and some OCD. I noticed anxiety before and after the stimulants. We have tried vyvanse, short & LA ritalin, focalin, & concerta. He could not do the Daytrana as he had a reaction to the adhesive and he was always picking at it until he pulled it off.
The hypersensitivity & OCD seemed to go away as the ADHD & anxiety worsened.
We just started Intuniv about 2 months ago. The tics are gone! My son is 8 years old. He is extremely smart (A+ student due to his OCD). He is starting to make real friendships on this new med. He has no weight issues (60% on the weight chart and 100? on height) as before Intuniv we typically used a dose of short acting ritalin in AM and another after lunch. He is a healthy eater, but did have mysterious diarrehea for most ages 1 through 3 for which we put him on soy at that time.
We also started him on probiotics about 4 wks ago. He has been taking fish oil and flax seed pills at the same time as the Intuniv (IS THAT OK?)
Our issue: my son is complaining that everything hurts him. Literally a feather fell on his head and he said “ouch.” Any bump is major to him. He spits out some food because he said it has hard parts in it. Warm liquids hurt his throat. He says the sun on a 70 deg days too hot. You get the idea. My husband thinks he may be looking for attention since the Intuniv has been so wonderful that he does not get the CONSTANT negative attention he used to get. I think that he anxiety has been controlled through Intuniv and now the sensitivity that he showed around ages 2-3 is back. My theory is that it was always there but was masked by the ADHD. I am concerned that he says his chest hurts, but it is typically after eating acidic foods. He is having minor headaches (lasting a few minutes a few times a week). He has told me a few times in the last 4 weeks that he was light headed when standing. He is also complaining of a minor stomach ache at times. I don’t want to minimize this issues as I know they could be very important after reviewing possible side effects, but he complains at the slightest touch and does not say that the chest/stomach/dizziness pain is bad at all. He says “my stomach hurts.” I ask how bad and he says not bad at all and then he walks off and does not complain about it again. It is also before he needs to poop. I am planning on calling his Dr. in the morning to get her input. I figure she will check his blood pressure. I am thinking about reducing the dosage to 2 mg but we went up to 3 mg in the first place because 2 mg only worked about 5 days and then did not help. He is his sweet self on 3 mg.
Is sensitivity to touch a side effect of Intuniv? I have search the 2 yr studies and saw nothing about it. Is 3 mg too much? He is sleepy but not too bad (mainly at 7pm his is ready for bed if he had sports that night.)
Sorry for the rambling, but as a parent who is also ADHD, when will Intuniv be available for adults?
Kerri,
Intuniv does not cause sensitivity you describe – unless it for some reason has to do with already high glutamate levels. Intuniv does increase glutamate, if you read the literature closely, and those with already high glutamate, such as is often seen on Neurotransmitter Testing of those with pre-existing immune dysregulation and metabolic issues. Said more succinctly: Intuniv could possibly show some aggravation of pre-existing sensitivity downstream from the immune dysfunction – I haven’t seen it, nor have I heard about it in numerous conversations with the research folks who did the original investigations.
I will leave the dosage specifics to you and your doc, but, as mentioned, don’t think the sensitivity issues are directly Intuniv. I am suggesting that the stomach pains are primary, not secondary, and significantly contributory to the challenges you describe… perhaps secondary to casein or gluten sensitivity. Testing for IgG would be in order just from what you have said here.
Intuniv can be used with adults, but the FDA has not yet approved an adult ADHD indication, so it would be off label. Tenex, the parent compound has been used with adults for many years for hypertension, and only recently received, after specific research demonstrated, an indication for ADHD in children and adolescents.
cp
I am a 44 yo woman with ADD. I also have long standing anxiety problems. I have managed my ADD symptoms fairly well with nutrition and excercise. I take Klonipine 1 mg at night. The thought of taking a stimulant for my ADD is scary given my history of anxiety attacks. Recently, my MD prescribed Intuniv. It seems the onset of perimenopause has worsened my ADD symptoms. Because of the expected fatigue, and the fact that I teach high school math, I will start this over Spring Break. I have had a recent heart work up and am in good shape. I do have low BP and once, after a marathon, I fainted from dehydration and was told by the EMT I had first degree heart block. No evidence of this has ever been noted on subsequent EKG’s, so I assume it was temporary. My questions are: Is there any anctedotal evidence that this drug works for adult ADD?Should I worry about very low BP? Will I become so fatigued and stoic that I come off as a complete dullard to my students? And finally, could this drug cause the AV block to reappear? Thank you.
Susan,
1. No problems with concerns about AV block in the context of your presentation, – just work with your doc on these details and be watchful, – it is medicine, and everyone is different so no absolutes. A problem is highly unlikely. Sounds like fluids were the culprit there.
2. No studies in on use with adults, but in my office we have had some good results used alone for those wishing to not use stimulants.
3. Don’t worry about stimulants if it doesn’t work, only go low and slower than usual. Most of the time Vyvanse will knock out the cognitive anxiety without adding to it. if you do have anxiety increased with Vyvanse you have a neurotransmitter imbalance that would very likely be correctable with targeted amino acid interventions following specific testing. In fact you may wish to start there with your other concerns.
cp
Hello Dr. Parker,
In reading Denise’s questions about the frustration level on Intuniv, I have the same concern. My son is now on 3mg of Intuniv for the past 2 1/2 weeks, and his frustration and explosive behavior is quite frequent. He is still very tired on the medicine, especially from after-school hours through bedtime, yet sometimes wakes up a few times at night. He’s pale and seems to have his eyelids half-shut at times. The good part is that his teacher says she sees marked improvement on his fidgeting in class and focusing on the work. She says he’s happy all day at school, but I get a different child when I get him home. He is resistant to doing his homework and complains in a nasty way through the whole thing, making it very trying every afternoon. Could this nastiness and explosiveness be related to fighting the tired feelings throughout the day? HIs doctor feels he needs to stay at 3mg given at the same time each day for the next three weeks to see the results. I’m trying to stay with it, but I’m getting tired of the anger and nasty behavior. It rules the house each afternoon and effects us all.
Thank you for any advice you have to offer,
Gail K.
Gail K,
As you can see, something is not right. And your doc has a point, – it can improve over time. My own approach in a situation like this is to do something to answer the mother’s concern and the child’s frustration. But what-to-do is again too complex with just this brief note on Intuniv alone. Several thoughts come to mind for review with your doc:
1. Does he have a comorbid depression that hasn’t been addressed?
2. Does he have a comorbid metabolic problem – breakfast, #2, picky eater, little protein, too many sweets, etc.
3. If the Intuniv proves inadequate for PM concentration there is the old standby: Vyvanse… has he been tired on that? It does work with Intuniv.
4. Is he getting enough exercise?
– Might be some answers in one of these inquiries,
cp
Dear Dr. Parker,
I am going to look into the possibility of depression since my daughter, 13, has also been diagnosed with ADHD and seems to be responding well to Zoloft alone. As for the metabolic issue, yes, he is a picky eater and I try to push the protein. He does eat breakfast but not always what I would like him to have. I have tried to make my own pancakes with cottage cheese and eggs and more protein than carbs to make it interesting for him. He refuses vegetables, except for carrots, so I encourage eating apples and strawberries, which he loves. However, he probably does not get enough of the fruits and vegetables no matter what. I try to bake the sweets he has so I can monitor the sugar and use whole wheat flour and sneak in protein wherever possible. How can you make a young child eat what he needs to eat? Sigh! As for Vyvanse, I am wary of stimulants because Tourette’s Syndrome runs in my family (his uncle has it and it has been very severe and life-changing). My son had a few ticks last summer and I’m concerned for starting those up again and possibly leading to Tourette’s. What are your thoughts on this? I will consult my doctor on the rest of these questions as well. So far, she has agreed that we should stay away from stimulants.
Thanks again for your response,
Gail K.
Gail,
If Tourette’s becomes a problem we always look at the NT values, as exceedingly high excitatory NTs downstream from immune dysfunction – most especially milk – can all be measured and often significantly corrected with neurotransmitter precursors. Myself, I wouldn’t stay away from stimulant simply because of family hx of Tourette’s, as I believe I have other intervention options if we do discover that difficulty. As always my policy: slow and low.
cp
Dear Dr. Parker,
Thanks you for your continued insight into my son’s condition. After 5 1/2 weeks on 3mg of Intuniv, his tired side-effects diminished markedly, but his temper flareups were still there, especially after school and when he was told “no” for something. I asked the psychiatrist what she would suggest and she decided to try Zoloft along with the Intuniv since his teacher said he was doing better at concentrating at school on the Intuniv. We have now given him two doses of the Zoloft (25mg). The first day it was given to him at 6pm, and he seemed to sleep lightly all night, eyes opening at various times throughout, and finally rising for the day at a crazy 5AM. I gave him the second day of Zoloft along with his Intuniv at 5PM. His behavior was fine all day, not even seeming tired, until we went out for a late dinner. He then complained of a terrible headache, which he has never had before. I had to take him out of the restaurant and wait for the rest of the family in the car so he could have quiet in the car until I could get him home. I gave him some Tylenol and put him to bed. He seemed to sleep soundly all night, from about 10:30PM, but woke early at 7AM. So far, he seems fine today…
What do you think about combining Zoloft with the Intuniv? Do you think that the headaches will diminish over time? We have had such a good experience with my daughter improving significantly on Zoloft that I would like to hope that it will help Max’s mood issues as well. Finally, should I split up the two drugs and give one in the morning and one later in the day? If the Zoloft is contributing to his sleeping lighter when I give it to him at dinner-time, I don’t know if giving it right before bed would be better or in the morning would be better. Quite frankly, I feel this trial-and-error stuff with the meds to be maddening. I just want a happy, well-adjusted little boy.
Thank you once again for your input!
Gail K.
Gail,
After checking with your doc I suggest trying the Zoloft in the AM with the Intuniv – I personally give it at night only if the recipient has a problem with over sedation. The more complications you have, the more likely more specific testing is indicated from several points of view. More information needed to accurately suggest specific actions.
cp
Dear Dr. Parker,
My son has been taking 3mg of Intuniv and 25mg of Zoloft (started Zoloft 2 weeks ago). He has become happier in many ways, but is now hyper most of the time and is having trouble falling asleep and staying asleep. Any suggestions?
Thanks again for your help,
Gail K.
Gail,
Yes, disinhibition is a frequent sign of the Top of The Window secondary to antidepressant drugs used with children. If it continues talk to your doc and either stop entirely, or replace with a small dose of another antidepressant if indicated.
cp
Dear Dr. Parker,
So Tristan is on day 6 of 2 mgs. of Intuniv. He is complaining more frequently of feeling “depressed.” His pediatric neurologist said that depression is not a side-effect of Intuniv, but I believe I have read otherwise. To make matters worse, his non-custodial father is brainwashing Tristan, grilling him, telling him the meds will turn him into a zombie (he does not know Tristan is being medicated, I went over his head in my desperate attempt to help our son be well). His father is depressed himself and will not admit medication may help him. It’s not right that a ten-year old has to be treated in this way; put in the position of lying to his father in order facilitate my atempt in pursing a medical answer to his problem. It’s breaking my heart and making Tristan feel worse. I have an appointment with a psyciatrist to discuss other options. If I decide to take him off Intuniv, even temporarily to try something else, how would this be done? Gradually? All at once? Please advise, and thank you for all your helpful advice.
Janis
Janis,
Problems like this one need intervention from a lawyer or a divorce mediator… With the conflicts between you and your ex regarding his meds he is obviously caught in the middle. My best recommendation is to find a mediator person, as most lawyers do what they can to keep the adversarial work going. With a good mediator you can discuss these issues, come up with a plan and sign off on it. Visitation itself may need renegotiation with your docs input.
In the meantime: Intuniv does not cause depression. Tristan may feel a bit sedated, – and for that one you do want to watch for the Top of the Window as described in this CorePsych Blog post on dosing. And, yes, he may be suffering with a comorbid depression with all of the pressures. The standard for Intuniv for discontinuation is gradual: slow, but only over a few days, and you can break it in 1/2 for that purpose.
And don’t forget, as mentioned elsewhere, there are many ADHD combos and other medical, neurotransmitter options. If Dad doesn’t want meds, consider neurotransmitter measurement and intervention with only amino acid precursors = supplements.
cp
If I may pipe in here from a non-medical angle….
I’ve heard many stories like this over the years of leading support groups for the partners of adults with ADHD — conflicts with co-parents, especially in shared-custody arrangements, over the very idea of ADHD, much less medical treatment for it.
I think I would feel “depressed,” too if I was a child given medication by one parent and told by the other than it’s bad. Especially, I hate to say it, by a parent who might say anything to win the child’s favor. (Keep in mind the genetic factor; if your child has ADHD, it might be that his father is not only “depressed” but he might have ADHD as well.)
Another possibility: When some people start medication for ADHD, their worldview changes, understandably. They slow down, start to notice more things (such as their feelings and the feelings of others). This can actually come as a shock to some. Imagine if you had poor eyesight and had navigated the world with it for a few years. Then someone gave you eyeglasses — it would take some getting used to this new world. And it might require some help.
Children need “psycho-education” when taking medication just as adults do. In other words, they need some help in understanding why they take the medication and how it helps them.
good luck,
Gina
Gina,
Thanks for your insightful and sensitive remarks.
Just to add one observed phenomenon frequently witnessed on the topic of ‘world view change’ – even with children. So often it appears that those suffering with ADHD, and living withing the envelope of shame associated with under performance and embarrassment, often have two distinct phases in their recovery once on meds and corrected.
1. The Maybe Stage: The first 3 mos of successful medical intervention they wait for the other shoe to fall, waiting to become a relative failure or problem again. Trust is gone and it takes significant time to rebuild in almost every interpersonal relationship. Self mastery builds bridges over the chasms of self esteem deterioration.
2. The Crystallization Stage: The next 3 mos, after seeing that they can remain in this new cognitive context without worrying about failure, they set out to change their lives, and often this happens with work and marriages. Said another way: I can be this other imaginative, follow through person, am actually more autonomous, and just don’t need that troubling cognitive dependence associated with seeking someone else’s prefrontal cortex for decision making. Bridges are built, now I’m going somewhere.
cp
Wonderful way to describe those phases, Dr. Parker.
I would add #3 for some people: Forgetting that the Medication Helped Me Get Here.
I always advise adults with ADHD to keep a journal — write down the challenges they’re experiencing in life and the things they’ve already tried. Then keep a log of rating scales, to show their gradual improvement over time.
The format and depth of detail can vary. What’s important is that they have a concrete reminder that medication (or physician-advised amino acids, anti-allergen diet, etc.) made a difference and to not discount its importance later. When they mistakenly assume it’s simply that new calendar that’s made all the difference. 😉
Gina
Gina,
Love your #3, thanks! Have often thought of a video interview locked down at the first visit, for review later ‘as needed!’
cp
Wow…thank you for this. I will chew on this for awhile. It helps me to understand what my son is going through. My heart just goes out to him. What a thing to live with.
Dr. Parker,
Thank you for your thoughts and advice!! Your site is part of my life now. Every time I get nervous about doing something for my son or even second guessing an issue regarding his ADHD I turn here. And let me say, it has really SAVED me 🙂 My husband just watched all of your videos here on this site and he said he is so glad that he did. He now has a much better understanding of our child’s disorder and his words exactly were “Wow, what a passionate doctor, I wish we could take our son to him”!!!!
I wanted to update you and ask a few more questions. We have decided to stick with the Intuniv a little longer. We started the 2 mg dose this morning and are going to watch the side effects for a few more days (mainly the emotional roller coaster issue)!! If this doesn’t work out in the next week, we are switching to the Vyvanse and using your titration guide to start Blayne on a lowered dose. We have been given the 20 mg and told to break it into 10 mg, however, should I go another notch lower to 5 mg since he seems to have longer lasting and more persistent side effects (and tics possibly with a stim) or would that not give him enough DOE since he starts the day at 7 am, homework at 6 pm, and bedtime at 8 pm?? I know it is trial and error, and some patients are at a good DOE even with 5 mg but I just wanted to ask an opinion first. Hopefully we will see the 2 mg Intuniv make some more marked improvement!!! Guess it’s just one step at a time 😉
Thanks in advance for your time, have a wonderful weekend!!!
~Robin
Robin,
Glad the info here is working for you and your family. I quite agree that your problem with Blayne is more than simple ADHD, as based upon the metabolic challenges. I agree with the suggestion of working with your doc there to go even more low and slow than expected based upon that history – and a 5mg start with Vyvanse could be tried with or without Intuniv. A clean trial with only one drug would give you a clearer picture, but again, don’t be disappointed if Vyvanse doesn’t work… I do strongly believe he has more fundamental issues that must be corrected first.
“Trial and error” become more “Trial and adjustment of dosage.”
This Neuroscience webinar on the subject is a bit deep, but might help explain just how the targeted amino acid precursors work to stabilize neurotransmitter challenges. Suspect an immune dysregulation, as I indicated before. If you do want to set up a telephone consult, do call our Patient Care person here.
cp
Hello again Dr. Parker! I wanted to update you on a few changes since we spoke last and see what your thoughts are…….We went back to 1mg of Intuniv after 6 days on 2mg. The 1st day Blayne was really sleepy, the 2nd not emotional at all and just very blah, the 3rd and 4th way “over” emotional and anything would set him off and he would cry his eyes out!! After almost a month on Intuniv is seems we are now regressing. I see old behaviors rearing their ugly heads, and the teacher is seeing that hyperactivity is still a problem at times. We went back for a check up on the meds, and he suggested we either start the 2mg again and give it a few days to see if the “emotions” are still up and down, and if they are back down to 1mg for a few days – and then try to move on to Vyvanse using the 20mg but splitting it to 10 mg to start with.
At this point I’m really not sure what road to take 🙁 I’m wondering on one hand…..have we really given the Intuniv enough time? And on the other hand……..is this medication just not “right” for my child?
In the mean time we are waiting for our NT Testing kit. Should I stick with the Intuniv until after we finalize that or just call it a loss and move on to the Vyvanse. If I do and the tics rear their ugly heads then I’m going to have to back off that med too 🙁 We have also scheduled an appt to have a pediatric neurologist possibly take over our case since the tics may be a long term problem to deal with when medicating our son.
Any advice would be greatly appreciated…..we are just scared and lost at this point in the game 🙁
~Robin
Robin,
As you know it would not be appropriate without actually seeing your guy to tell you specifically what to do…not good medicine. Short and sweet, I do quite agree with your doc and am very pleased to hear your doc is suggesting the micro titration strategy on the Vyvanse as outlined more in this Vyvnase Water Titration Post at CorePsych Blog. On a reassuring note: one simply can’t predict exactly what will happen at this pont, and no harm will be done trying this suggested intervention.
Further, the NT testing will be helpful, with more specific info on the excitatory increases so often seen on NT with tic disorders. I think I did mention this before elsewhere: tic disorder for me at this point almost requires NT testing to see the actual NT landscape, rather than simply chasing down symptoms with med changes. Comprehensive strategies arise from more comprehensive evidence.
On the ped neurologist: I am always for second opinions with any of my valued medical colleagues. If another doc has an improved answer, all to the good – no matter who is seeing your son. If you were in my office, I would encourage that follow through, but not from a point of worry, but from a pont of confidence that more information most often provides better results.
cp
Hi Dr. Parker,
I’ve been checking in from time to time on this thread with our Intuniv progress. Thought I would again. We have been on 4 mg now for about 3 weeks. This is the only dosage that we have seen any change. His school work is night and day. The ability to focus on it and especially complete writing assignmnets is AMAZING! Also very nice and neat cursive.I have homeschooled him for the last 2 years, he is in 5th grade. Our goal was to bring him home and get him to where he can be mainstreamed again. I have just recently enrolled him in 2 outside classes, kind of a test to see if he would function in a classroom setting. The teacher’s feedback was that he was one of the best behaved kids in class…yeah for him! It’s only the first week, maybe a honeymoon period, we’ll see. The area where he still struggles is frustration level and outbursts. Granted they have gone down in frequency…is it just old habits die hard? That he has gotten used to dealing with things this way because of his ADHD? (he’s 11 and never been on meds)I also see windows of real comraderie with his sibilings, which was never there before. But I’m concerned, is Intuniv enough…should the outbursts be gone? Should he have a higher frustration tolerance level? etc… etc…
I am hoping to be ablt to have a phone consult with you in March (saving my pennies;)
Thanks Dr.Parker
Denise
Denise,
Super, and yippee! 😉
All of these are natural maternal concerns… but my recommendation at this point: hang loose, find a good perch, and watch. Time will tell. All of your questions, regrettably, are quite unpredictable, except for the fact that he likely will maintain well and improve with age. More PFC neurons = better executive function over the years, and better executive function brings better self esteem, even more improved control.
The prognosis is good unless you guys missed something, and whatever you find down the road will be much more fixable in this new context of improvement.
Excellent news!
cp
Thank you Dr.Parker for your encouragement and support, and your passion for these kids!
Kind Regards,
Denise
My son has been on Intuniv about a month and we would not consider it a success. He is highly impulsive at school and it does not help his attention at all. He is wiped out contantly. 2mg and he is in bed right after school all the way through dinner and beyond. Gonna try to back down to 1 1/2mg but probably will pull the plug. Was hopeful at first but it really is no help at all. The only positive side is that he is in a good mood compared to his experience with other ADHD meds. He previously was on Concerta and he was very aggitated.
Rebecca,
Intuniv, as mentioned in another reply is not the silver bullet for complicated cases, as more than one neurotransmitter system is likely in play… and the most important, overlooked issue in complicated, poorly responsive situations is the issue of immune dysfunction and the cytokine question – take a look at this webinar which may come close to the issue for you.
cp
Hello Dr. Parker,
My 10 year old son is on Vyvanse and is starting Intuniv this weekend. I believe I’ve read instructions here for how to drop down the dosage on Vyvanse while gradually increasing the Intuniv. Our pediatrician is well-versed on the latter, but I got no info on reducing Vyvanse. In any case, I’m having a lot of trouble finding the info here using the search engine, because so much seems to be buried in the comments section. I hope that a) you can help me, and b) this feedback is helpful to you. I refer friends to your site frequently, btw!
Thanks so much.
Cindy,
Vyvanse titration strategies are easily found by using the *Search* box on the blog here – just type in Vyvanse and your will be busy for awhile! If you want a quick link to a site loaded with titration strategies try this one: http://www.squidoo.com/vyvnase and don’t forget to download my instructive and easy White Paper on Predictable Solutions for ADHD Medications here.
Thanks, cp
Dr. Parker:
Thanks for the wealth of information on intuniv. Our Dr. just gave us intiuiv for our 5-year old son (just turned 5 on 12/8/04) and we are combing through the details of efficiency, safety, side effects and logistics. One big questions I have is this .. there is no research on children who are 5 using this drug. Obviously, our pediatrician, with 4 decades of experience in medicine, would not give us something harmful for our child, but do you think giving intuniv to a 5 year old is OK? Thanks in advance .. Joe
Joe,
It’s only ‘off label’ because it hasn’t been approved by the FDA for that age. Barring any other medical challenges there should be no problem – it’s always inappropriate for me to make a recommendation in this regard – I leave that one to your esteemed doc.
cp
Dr. Parker,
Thank you so much for your feedback!! My husband and I are new to this and we really just don’t know where and how to get started! We would like to get the testing done on our son Blayne but do not know where to begin! I would love to have a phone consult with you and give any information to you about our doctor if you would like to speak to him as well. Can you explain the process and how we can get started??
I was a picky eater, had bowel issues and still do. Blayne is a picky eater and has some occassional constipation. He eats the food I put in front of him most of the time, he loves fresh veggies, just doesn’t eat them cooked! He is not a big milk drinker at all and only drinks chocolate milk on occasion. When he was a little younger we gave him Boost alot to give him the added protein, ect. He’s on very good multivitamins and he has been taking Coromega for about 7 months now. We have always given him some form of fish oil, I even took it during my pregnancy!!
After 4 nights on the 2 mg dose of Intuniv, we are still experiencing the night waking. It’s 3 times a night or so, however, that is not unusual for our son. He wakes up wanting water, to use the bathroom, or to tell us about a nightmare. He was also diagnosed with mild Anxiety. To us and our doctors the Anxiety is not enough to tack on another medication for it. It’s nothing major in our eyes. He just sometimes thinks well beyond his years and worries about some things a child should not, ie, hearing someone talk about a Robber, ect. We also limit any television programs that would frighten him.
Yesterday his teacher wrote a short note to me. She wanted me to know that he had an awesome day! He was very focused, attentive, and very motivated!!! 🙂 It seems we are making some wonderful progress with the intuniv!!!!
I hope this additional information helps. Again, I’d love to find out how to have a consult with you and what testing can be done to benefit our child and better his treatment!!! 🙂
Robin,
With the many symptoms well beyond ADHD your guy is an excellent candidate for NT review. I have some suggestions about phone consults on this CorePsych page, and will send you an offline note to make it easier to connect. Glad to hear about the Intuniv, an excellent example of the more complicated ADHD presentations often covered by Intuniv.
cp
Parents — If you at all possibly can, I HIGHLY recommend pursuing the Neuro-Endocrine testing (or whatever form of the NT testing Dr. Parker recommends for you).
It is easy to do — your child has to just spit and pee! Think of the fun they will have taking such a “test”! 🙂 And then you just pop it in the mail or UPS. Dr. Parker’s office e-mails a PDF containing the results to you, so you can refer to it during your phone consultation. (Remember…..your child can see these results, too. I think whether you’re an adult or a child, it helps immensely to see concrete “data” that correlates to your challenges. Otherwise, child or adult can be left feeling the judgment has been made subjectively or that it’s a character/moral judgment or just some “quack’s” opinion.)
Dr. Parker and I have no business relationship. I am simply a fan of his, and I’ve also been a volunteer advocate in the ADHD community for many years. For way too long, I’ve observed way too many parents and adults struggle for years trying to zero in on specific issues covered by the testing.
Let me assure you: It is a painful, tedious process playing “Pin the Meds on the Adult/Child with ADHD.” Too often, the side effects from the wrong medication or wrong dosage are interpreted by well-meaning people (therapists, teachers, etc.) as “personality problems.” That alone can send you down many wormholes. Moreover, many years of critical development are lost for the child. With adults seeking treatment, oftentimes marriages, jobs, and good will are lost as the person founders through treatment. Costs are HIGH and sometimes PERMANENT.
I wish my husband (who has ADHD) and I had had such testing years ago — not to mention the “big picture” expertise of someone like Dr. Parker. It’s staggering to think of how much expense, grief, frustration, etc. this would have saved us.
My husband is a molecular biologist — a hard-core scientist — and he’d be the first to say that the NeuroScience Inc. testing is still experimental on some level. Scientists and the entire medical community have a very high level of expectation about medical claims. So, if your physician has told you that this kind of testing does not give iron-clad results, well, there is some truth to that. What your physician probably does NOT understand, though, is this kind of testing provides a heckuva lot more reliable data than anything else we have available now — especially at this affordability. And especially when someone with Dr. Parker’s expertise interprets the data.
I am “pro-medication” for ADHD, because I’ve seen the incredible results in thousands of people. That said, if I had a child who had been diagnosed with ADHD, I would NEVER start ANY medication treatment before performing the types of tests that Dr. Parker recommends. There are too many other baseline issues to address with non-medication strategies first. Plus, I would want some kind of “map” to see where we’re starting and where we should go, not to mention measure progress along the way.
Even if you don’t have insurance (which, thankfully, usually covers this testing), it’s still a good investment in your child’s well-being. Relying solely on insurance-plan physicians who don’t understand the complexity of these issues can be a huge false economy. My advice from years of experience: Cut back on every other expenditure possible, and focus on this CORE issue. All else in life depends on a solid foundation of mental health and healthy brain functioning.
And parents, remember that ADHD is 75 percent heritable. That means if a child has ADHD, chances are good that one or both of the parents was the biological donor. Studies show that children with ADHD whose parent has untreated ADHD have a harder time. So, if you hope to do the best for your child, it’s important to face your own ADHD challenges — or help your co-parent to face his/hers. ADHD is a family issue, and focusing solely on the child when a parent is also displaying ADHD symptoms seldom works out in the long-run. In fact, it can backfire horribly. For a whole host of reasons.
Okay, end of lecture! 🙂 I just had to take advantage of this huge assembly of parents who are smart enough to find Dr. Parker’s blog and who obviously want the best for their children.
Good luck, everyone, and please keep reading Dr. Parker’s blog, watching his YouTube videos, etc. You will gain a first-class education.
Gina Pera, author
Is It You, Me, or Adult A.D.D.?
Stopping the Roller Coaster When Someone You Love Has Attention Deficit Disorder
http://www.ADHDRollerCoaster.org
Gina,
What a pleasant surprise on a snowy Va Beach Saturday! Thanks so much for your candid, supportive, and correct remarks! It’s hard for me to remain neutral when we see the percentages of positive outcomes improve using applied neuroscientific testing, – for ADHD, depression, Asperger’s, ASD, developmental delay, even frankly psychotic presentations, all frequently have imbalances and significant neurophysiologic challenges that I have been missing for years. If the clinical condition has an emotional, behavioral or cognitive presentation, these NT findings and associated immune/hormone dysregulations will tell us more than we can find thru questionnaires or insightful questions. Most of the underlying ‘background noise,’ which ultimately proves to house the actual underlying causal factors, are chronic and almost completely silent.
They don’t shout at us, just as ADD – without the H – didn’t for many years.
While testing doesn’t cover everything, as these challenging presentations vary in complexity, it is surprising to me, even after working in the office for 40 years, what benefits accrue from improved details on the brain function side. As you so accurately point out, biomarkers don’t make the diagnosis, and functional neuroscience has very little to do with DSM-4, – as DSM-4 lives so much with surface labels, not biological function.
The most interesting aspect I find in the application process is hooking the lab findings up with the available science on co-factors, and the underlying neurotransmitter biochemistry with the real clinical complaints. Brain SPECT scans are useful, but they provide only macro pictures of function that require an enormous guessing leap to suggest effective interventions for cellular improvements. So why not measure the cellular function precisely in the first place? Any evidence is helpful, but from an ROI [return on investment] perspective, I love this new science, and am appreciative that is working for you and your interesting husband – skepticism is welcome!
Thanks – look forward to chatting soon,
cp
You’re right, Dr. Parker. Journalists (that’s my profession) and scientists (my husband’s) are typically skeptical. As the scientists say, “Extraordinary claims require extraordinary proof.”
But the smart journalists and scientists keep an open mind as they test out the claims. They also bring a large amount of real-world practicality and compassion to topics such as this. Lacking perfect metrics and diagnostics for these very complex brain/body issues, we must be unwilling to let the perfect be the enemy of the good.
The more data we can gather — from biomarkers, interviews, third-party feedback (teachers, parents, siblings, etc.) — the better. Real lives do depend on it.
Thanks for being here.
g
Gina-
As my old buddy Aldous said: “Experience is not what happens to you – it’s how you interpret what happens to you.”–Aldous Huxley
The new science of precise laboratory measurement is rapidly changing how we interpret commonplace observations – the illusion of perfect implies, as you so accurately point out, reductionistic, only linear thinking. Reductionism lost considerable significance in the history of scientific thought with the study of particle physics in the 1930s following Heisenberg and his Uncertainty Principle – a most interesting perspective, which introduces the concept of time and change to the most precise measurements. Werner was awarded the Nobel Prize in Physics in 1932.
Well said!,
cp
Sold! and now am motivated enough to overcome procrastination. This donkey has too many ineffective pinholes in his butt. I will call Caitlin in AM. LUG dh
David,
You will love it, coming from your scientific background.
cp
Data is always important. My husband had the benefit of me being a regular Sherlock Holmes as he tried various Rx at various dosages. Not everyone has a person like that around. (And while I can’t say he was always grateful for the service during the process, he was after all the dust settled.)
Moreover, ADHD itself means there are problems with observing phenomenon — internal and external. The right medication can enhance that ability, and the wrong medication (or the right, at the wrong dosage) can exacerbate those deficits.
Good luck, David, and speedy healing of those pinholes. 🙂
g
Hi Dr. Parker,
This is my first post here. I came across your blog while reading up on the new medication “Intuniv”! I have learned so much information on ADHD here. It has answered so many of my questions and I’ve been so excited to read the thoughts and concerns of others in my shoes and to know “I’m not alone” is the best feeling right now!!! My son is 6 years old and was put on this medication Jan 16th starting at 1mg. I have a family history of Tourette’s and ADHD so this was the best route for us at this time. We tried Medadate for a short period and the tics surfaced right away! He is very thin and short…..gets it honestly I might add 🙂 He’s 40 lbs and because of his weight his Psychiatrist said we will probably stay at 2mg for a while. We have had some good changes thus far, and very quickly I might add!!! The only drawback for my son has been the extreme sleepiness. He has the occasional headache and stomach ache but the tiredness got the best of him shortly after starting the med so we moved his dose to night time per our doctors suggestion. He did have the night waking issue for a few days but it got better. He has just started the 2mg dose on the 23rd. He is waking up several times through out the night and is some what emotion less. Mornings are hard, he’s still very groggy upon waking so I’m trying to make sure I stick to that protein breakfast every day! I’m confident that the side effects will lessen with time, as they did with the 1 mg dose. My first question to you is, when do I become concerned that the 2mg is just “too much” for now and that we should back down to the 1 mg for a little longer? Also, should I move his does back to mornings? Will the effects be more beneficial to him or the same? I’ll leave it at night time if the effects will be the same for him but if he will get more out of the medication by taking that morning dose then I’d like to change him back to the am dose, however If he’s going to have a problem staying awake at school with the am dose then it only makes sense to stay with the way we are doing it!
Any advice and information would be greatly appreciated! I look forward to hearing from you and reading more from you in the future 🙂
Robin,
Thanks for your remarks, and for joining us over here. When I see Tourette”s in my office I now have a different view than previously. I am determined to chase down the underlying metabolic reason – and that possible cause/reason, as I have repeatedly suggested is a strong possibility on this post [and indeed the other Intuniv posts] is likely immune disorder based. Without the details and only a couple of hints this guess is less likely to be accurate, but we collectively need to change our thinking from symptoms to causes. His symptom review will always result in repeated guesses. Lab findings and a more careful workup will bring more biomedical info that significantly improves prognosis.
The immunity challenge, often associated with GI issues we have so often taken for granted as insignificant, can be addressed with testing quite easliy, and we have often chased these challenges down by a simple phone consult – and can work with your doc long distance.
The findings that pique my interest:
1. Tourette’s
2. Reaction to meds that appears unpredictable
3. His and your [genetic] thin and short stature – would ask about head and body disproportions
4. Wonder about picky eater, bowel changes, stomach issues, hx of nausea, hx of waking with nausea,
Even with all of these negative on the surface, he may not have inflammation per se, but could simply have a toxic reaction, all of which can be measured.
Regarding the Intuniv: You and your doc are already on the right track. He should be better over time with the AM dose, it does take time, and in the meantime he might be best at a lower dose as he is only 6, and isn’t worried about going to college next year 😉 – that one I leave to your judgment with your doc.
Hope this helps,
cp
Dr Parker, I reviewed your background with interest this evening; I have a complicated bacground but now ‘pay the bills’ as a solo practice psychiatrist. I am well-educated: MSTP Grant for my PhD and MD, and Boarded in Psychiatry and in Anesthesiolgy, I been recovering from opiate dependence for 16 years, and so the new medications that can be use to treat addiction are an area of significant interest.
To be brief: I have a number of web sites where I educate people aboutt the proper use of the medication and the threatment choices in general. I try to provide the information that I would want to know, if onw of my chidren was addicted to opiates. I also sell recordings for studyging for the psych boards.
I found your mixture of science and innovative transfer of information interesting, and have been looking for a collaborator for some time do do similar work with the epidemic of opiate dependence sweeping the country.. There are many NIH funding opportunities that I am noticing others using to prepare sites similar to what I have done for free.
Do you ahve experience at running non-profits or at applyig for grant money? I have treamendous drive, but need heop focusing my efforts behind a good business plan. IF youare interested, please contact me at drj@fdlpsychiatry.com.
Jeffrey T Junig MD PhD
Psychiatrist and Owner, FDL Psychiatry
Owner, Wisconsins Opiate Managemen Center http://www.wiscoonsinopiates..com
Owner, Terminally Unique Publishing at http://www.terminallyuniquepublishing.com
contains: http://www.shrinkboards.com for psych education, http://www.audiopsychiatry.com, http://www.soberaftersub.com
My Web Sites: http://fdlpsychiatry.com (my psych practice)
http://suboxonetalkzone.com a blog about buprenorphine and opiate dependence
htto://suboxforum.com a forum for opiate addicts to rage against the machine
http://soberaftersub.com ways ot get off Suboxoen whent the time is right
http://bupeguide.com my e-bood about suboxone; I have a much larger one in the wings.
Jeff,
Back to you at Linked in, let’s do keep in touch, we have many similar interests, not the least of which is finding the best way to get matters right.
Have you had any experience with low dose Naltrexone for casein or gluten withdrawal?
cp
Just found this website and have thoroughly enjoyed reading the questions and responses from the doctor! Sharing in your experiences is helpful to me, a mother to an almost 12 year old son with ADHD (since birth!). He is a fantastically bright and funny boy, athletic and gifted on-stage, and has the ability to be sweet and tender (towards siblings and me & his daddy) —but you rarely see it unless he is on his medication. If he is off of it, and just “himself,” he is irritated about something — anything, moody, cranky, and all of this comes out in how he speaks. Any old thing can set him off. He is defiant, willful, disrespectful. A year ago we sought out a child psychiatrist who instantly confirmed that he had ADHD, and prescribed for him Adderall XR. He has been on that for 1 year now, and when he is on it, he is a whole ‘nother child! His grades went to straight As, he’s relatively obedient and generally agreeable, definitely focused and the hyperactivity is all under control. I hate to phrase it this way, but he’s the son you always hoped you’d have! I can hardly complain –when he’s on the medication. The problem we are experiencing now is that every single meal time is a struggle. In 1 year, he has gained 1 pound, and that is because my husband & I stay on him 24/7 to eat, eat, eat. If it were left to him, he’d probably never eat! We have tried everything …. protein shakes, favorite high calorie foods, protein bars — he’s just “blah” to most everything, and he never was that way before. My younger son who is 2 1/2 years younger than him is now the same height and weight as him, and although it may just be that the younger son will naturally be bigger and taller than this child, it may also have something to do with the appetite suppression. So, we are looking to change his ADHD medication to a non-stimulant type drug, but do not want to sacrifice the successes he has experienced at school and in sports. We have seen his confidence soar as a result of the improvements and the accomplishments he has made in school, sports, his extra-curricular activities, this past year. I do not want to exchange one for the other. I’ve read great things about Intunev and Tenex but am skeptical of switching while school is still in session, because I’ve heard these other drugs take awhile to get up to speed in the system. Any advice? I have an appointment to discuss all of this with his pediatrician next week. Sorry to be so long-winded. Thanks for any information you can provide.
Sincerely,
Ellen
Ellen,
I do agree with you on the theme of don’t mess with success – from a point of view of dramatic change. My experience with Intuniv in the context of already successful intervention: combine meds for awhile and assess if the Intuniv does correct some of the other challenging attitudes. Further, I do prefer Vyvanse over Adderall, by far, as your medical team can dial it in for ~12 hr DOE watching the Sides of the Therapeutic Window.
Stimulants don’t have long term side effects unless they are incorrectly titrated, and it sounds like he is in an excellent titration zone at this time.
cp
Good point about maybe trying Vyvanse, Dr. Parker.
So many people seem to think that all stimulants are alike. So, if one isn’t optimal, they go to a non-stimulant choice.
But in fact, it often takes trials with several different formulations and delivery systems to find the right choice.
Gina
Gina,
Thanks for weighing in, you’ve been hearing these reports from many in your exposure to hundreds of caretakers and interested parents through your own speaking and writing at ADHD Roller Coaster. Appreciate your input!
cp
Dr. Parker ~ Thank you for your reply, and Gina too! Some follow-up questions so I am sure I understand correctly. Would you suggest I try to switch my son to Vyvanse, thereby staying w/in the stimulant family, rather than dramatically change him to a non-stimulant like Intuniv? (Incidentally, I’ve just read up on Vyvanse on the internet, and it does seem like a much more well-tolerated stimulant ….. still, the potential for decreased appetite concerns me.) Or, leave him on Adderall XR and incorporate the Intuniv? His appointment is on Wednesday, and I just wanted to know what to bring up with his pediatrician. Also, is the periactin that you cite as being useful in jumpstarting the appetite ok for use in patients taking Adderall, which he is on now? I know that lots of over-the-counter meds are not ok for use in conjuction with that particular drug. I suppose on other thing I didn’t bring up is duration of symptom control. Currently, he gets about 12 good hours with his Adderall XR, which is great for MOST days. The only time we have a problem is when/if he has a late baseball game (one that starts at 7:30-8:00pm). If I have given him his pill at 8:00 am before school, we can guarantee it’s going to wear off sometime during the 1st or 2nd inning of play. He does his best to harness his attention span, but everyone can see a different player out there. Late games are a killer ….. :[ Does having this information change your mind about what you suggest we do? Can’t thank you enough for your input! What a blessing this blogspot is!!
Ellen-
1. Periactin is ok, has to run thru your doc.
2. Vyvanse is a good alternative to Adderall, better in many respects, less appetite suppression, still has to be taken with protein breakfast.
3. Intuniv ok with any of these.
4. Usually, to get 12 hr from Adderall the appetite does go down – because it’s a bit out the top of The Therapeutic Window – and titrating that dosage downward, possibly with a low AMP dose in the PM, may completely improve both the drop and the appetite without Periactin.
On record: we are simply saying there are several reasonable additional alternatives that bear consideration if you get stumped, and Vyvanse is one of them in this context. I’m sure I speak for Gina when I say that our collective mission is education on the larger scale, not rendering specific treatment advice – there are just too many variables – most especially the great likelihood of significant metabolic noise humming in the background.
Glad you have a few more paths to consider!
cp
Just a quick update. Saw the pediatrician on Wednesday – discussed many options. She was very impressed with my “knowledge” of so many things (I had to confess I had learned a lot on this blog!). At any rate, we decided to leave my son on the Adderall, and phase in the Intuniv (1mg) …. go for a week, then step it up to 2mg, go for another week, then step it to 3mg. When we are somewhere in the 2nd week on Intuniv, possibly at the start of the 3rd week, we are going to step down his Adderall XR to 10 mg (he’s on 20mg currently). We’ll go with that for a couple of weeks — then evaluate. The target plan is to get him off the Adderall completely, but we want to move in that direction slowly, so we can tell, step-by-step, which med is accomplishing what. I can say after having only taken 4 Intunivs (he takes 1x nightly), we are so far doing well — and not experiencing the drowsiness that I was worried about! It seems to make a difference between the patients that take in the morning and the patients that take at night. I have him take it at about 6:30-7pm, and he goes to bed somewhere around 9 on a normal night. I will keep in touch!
Ellen,
Solid, thanks! Your report matches what others are saying about the PM dosing and it’s good to have some options right at your fingertips. Sounds like your doc is terrific!
cp
Hi Dr. Parker,
Just wanted to give you an update on my son’s progress through treatment with Intuniv and Strattera. I posted just after Christmas, and raved about the wonderful change we saw in our son once he started Intuniv (we added it to his Strattera dosage of 50 mg. daily).
After the new year, on the advice of our neurologist, we tried taking him off the Strattera to see how he would do on the Intuniv alone. We had seen so much difference with Intuniv that we wondered if he even needed anything else.
But apparently he needs both.
Although his behavior on the Intuniv alone was still MUCH better than on the Strattera alone, we, his teachers, and his counselor noticed an obvious backslide into some of his previous anxious and aggresive behaviors. Interestingly though, his tics did not return at all, so the Intuniv is obviously taking care of that. But he went from doing his work every day to not being able to focus as well on his work, got more easily distracted, and also very emotional at times. I really began to see some of his old aggressive, moody, and frustrated behaviours at home as well. So after 2 weeks without the Strattera we have started him on it again at 25 mg for now and then will up it back to 50 next week.
I am disappointed that the Intuniv alone did not seem to be working, as I really really hate having to give my 8 yr old 3 pills every morning (2- 25’s of Strattera + 1- 3mg Intuniv), even though I know they are helping him. It is hard when your child takes more meds than you do.
I am hopeful this will return him to the way he was before Christmas – happy, sociable, easy-going, and hard-working.
So questions: he is still really really drowsy sometimes. He often falls asleep in the car on the way home from school and even fell asleep in the principal’s office while waiting for me one day. Should he still be this sleepy after 1 full month on the Intuniv (3 mg)?
He also seems much more constipated than usual and often screams because his bowel movements are sometime really difficult.
I am still searching for various proteins he will eat for breakfast so perhaps that will help everything once that becomes more routine.
Thanks so much for your very informative blog – I read it often. It is so fascinating to me how the brain works!
Carrie,
Thanks for your kind remarks! As you know I don’t want to tell you what specifically to do, but find in my own practice that the bowel issues always complicate the response. Now you know that I absolutely don’t like categorical remarks, so ‘always’ may sound a bit emphatic, but, as they say, ‘it is what it is…’ With drowsy ongoing, I strongly consider going back down if it continues to the prev dose.
Flaxseed meal in the AM, one to two tablespoons with breakfast, and Omega 3 Fatty Acids [fish oil] in the 2000 mg range could significantly help with regularity and moods. Researchers are using 03FA at Harvard for mood stabilization, and studies do show they help with ADHD. Do read this CorePsych Blog breakfast post to consider protein options.
cp
Thank you for your quick response, Dr. Parker. I just wanted to say that I appreciate all your help with complete and total strangers such as myself, who have given you no recompense or incentive for helping. While you may sometimes feel like our posts are just words on a blog – and you get so many of the same words over and over! – from the nameless world of the computer, we as real people with real difficulties truly appreciate all that you do. I have learned so much from this blog and that knowledge is helping our real-life family daily in a true and meaningful way, and is helping us make a better world for our troubled child.
I will try the flaxseed oil. We have been doing the fish oil for years – even my 3 year old daughter gets it. Tried the protein power breakfast this a.m. – not a hit but will keep trying.
Weirdly, since I posted only a couple of days ago, my son’s drowsiness seems to have diappeared. But it may be back tomorrow, who knows. It is no longer a daily occurence. I think we’ll stay at 3 mg this month and if it continues we will drop it back to 2. Since we have added the Strattera back he is definitely doing better, even though we aren’t up to that target dose yet. Maybe for us the Intuniv+Strattera is the magic combo.
My son’s report card this term was much much better in almost every category. I am daily amazed and grateful for these medications and the assistance they give. His self-esteem is so much better, and he greets every day with a smile. To sum it all up, I can definitely say that where once his glass was half-empty, now it is half-full.
Carrie,
As they say in the streets, very cool! Thanks for your kind feedback, I just love hearing people getting the details straight, and when they do the plan most often does come together.
One quick point [without chasing down my previous response], – I usually don’t recommend flaxseed *oil,* because it is high in Omega 6 fatty acids [06FA] which are pro-inflammatory with increased AA [arachidonic acid], – actually after we measure these as indicated, with Metametrix at this last link. Yes, O6FA but may required in the long run to balance 03FA, but on the front end we go with the meal…
Flaxseed *Meal* is available in most grocery stores [on the flour aisle, down near the corn meal – not *Seed* unless you grind it yourself], – and is useful for constipation, with both soluble and insoluble fiber, it is innocent, with no problems, except being too mild for the job. Dose: 1tblsp – 2 in the AM eggs or cereal, often works like a charm even with challenged transit times. Not recommended for regular increased frequency – that’s another problem.
cp
Interesting bit about flaxseed oil — I didn’t know that. I hear from many people who think that flaxseed oil is somehow healthier than fish oil, for getting omega-3s. But I’ve read (perhaps on your blog, Dr. Parker) that flaxseed oil may not produce the desired Omega-3s as well as fish oil does — something about the conversion process.
May I take this opportunity to mention MAGNESIUM? Americans are largely deficient in this key mineral, and limited study has shown that kids with ADHD might be particularly deficient.
Why do I mention this here? Because magnesium deficiency can be a factor in constipation. Milk of Magnesia acts as a laxative, but that’s not a good way to supplement (this actually depletes magnesium). The more absorbable forms of magnesium are best — glycinate, citrate, etc.
I’ve also known adults who’ve experienced relief from chronic muscle pains, Restless Legs Syndrome, migraines, and more from magnesium supplementation.
I really need to write a blog post about this, instead of taking space here! 🙂 But with all these parents reading, I think it’s important for you to know that dairy products can exacerbate magnesium deficiencies, as calcium and magnesium need to be consumed in a balanced ratio.
Gina
Gina,
Oh yeah! We see magnesium issues very often, and can see them with bowel issues, or without obvious bowel issues. Excellent point on the calcium connection as many just do the calcium, and miss the magnesium. Interesting how many come around quite quickly with Mg supplementation, and how it helps acid base balance, calming inflammation. Good idea on the post – we both should write on Mg – and compare notes! The muscle pains can show as jaw tightening, grinding teeth, restless legs, and almost always have frank bowel issues associated: IBS-C or D
At the health food store for adults: Try CALM, with magnesium citrate… a bit expensive but tastes great, and works to help with acid base balance issues.
You my friend, with your insightful remarks, are absolutely never taking space – anywhere! 😉
cp
Thanks, Dr. P!
Good point about the acid balance. I should read up on that.
I do take my mag citrate (in powder form) with a little lemon juice. I hope that does the trick, but need to verify that.
g
Gina,
Mg Citrate is good in any form, and while I haven’t sipped a cup of warm *Calm* in some time, I seem to recall it was flavored with lemon.
cp
Hi, I am in the process of getting my Fifth-grade son on Intuniv. He has all the classic symptomos of ADHD and his self-esteem has plummted to the point that we are all fighting and crying all the time. I have had him in behavioral therapy for four months now, and while it has been helping, he still has anger issues, mood swings, irritability in the morning, and an inability to stay focused in school. His grades are average, occasionally below, sometimes above, he is a sweet, kind, funny kid, however he is socially immature and a target for teachers to pick on him when he isn’t paying attention as this leads to distracting the other students. I am praying that this medication, being prescribed by both his pediatric neurologist and recommended by his behavioral therapist, will raise his self-esteem so that we are a happy family again and he will be ready for sixth grade. My question is this: Will he have to be on this for the rest of his life? Thanks for listening. I have learned a lot through this blog.
Janis,
My inevitable answer with this basic question is always the same: I dunno. My focus is what to do now – and having made pronouncements in my younger years I now fall back on the wisdom of missing the mark simply because the years ahead bring so many different variables. My suggestion: Get tight with your doc, see if the new brain refraction works, and use those new glasses as long as it makes sense.
cp
Hi Dr. Parker,
I wrote in on December 23. After discussion with our docter, she is convinced that we can do better for Rachel than she was doing on the Intuniv. She was still extremely sleepy, lethargic, and pale at 2mg. of the Intuniv. Doctor is putting her on lowest dose of Vyvanse and recommends just as you do to start slow and increase slowly even mixing with water. I was glad to see that this was a med you recommend and that my doctor seems to be on the same page as you. I was wondering if you could enlighten me further on the antidepressant, Mirtazapine 15mg. My daughter is definitely showing signs of anxiety, not sleeping at night, pulling her eyelashes out, sweaty palms, excessive worrying about school. We had such a horrible reaction to the Prozac that I just wanted to get your take on it. I did a search, but have not found any information on this site about it. Again, I appreciate your generous time and the help you give to so many. I see that this blog has grown and you are a source of comfort to many.
Sandy
Sandy,
Honestly you need more of a workup for your girl. Pale, sweating, pulling eyelashes, reaction to prozac, reaction to Intuniv, do consider NT testing, as it will provide more answers. See Kate’s results here.
cp
I wanted to post an update on my son’s progress since starting the protocol prescribed by Dr. Parker based on his analysis of his NT results. We’ve had some interesting developments that I wanted to share with the members of this blog. He is now drinking soy milk instead of cow’s milk and he’s eating a protein breakfast EVERY day. He has been taking the supplements Kaviance, TrevaCor and the using the Taurine spray. Prior to that, he was taking 2mg of Intuniv with pretty good results….I was definitely seeing improvement, but nothing even close to what I’ve witnessed this past week. Here’s the twist – we ran out of Intuniv and we were unable to get a refill right away due to bad weather. Then the pharmacy ran out and I was going to have to wait another day. Jack had a great week at school and his whole demeanor has improved 100%
Thanks for your help!
Kate,
Music to my ears! After all the struggles and with just a few days, terrific!! – & thanks for sharing
cp
Kate –
Sounds great!!! Love it. Readers: Remember these comments follow a good course of evidence. We don’t make any recommendations without solid facts.
Thanks again!
cp
I wanted to add a few more comments regarding my son’s improvement since beginning the new treatment protocol. His skin color has improved and he’s no longer fatigued. I think for the first time I’m seeing him with the “typical” amount of energy a boy his age usually has. He’s a little wound up, at times, but I think all of that will even out as we progress. Unlike before, he wakes up refreshed and ready to go without lots of whining, complaining and crying!! I am truly amazed at the change taking place in my son. At the start of the new year, he began attending a private Montessori school which is a better fit for him. His teacher told me yesterday that since he started the supplements, he has not had a meltdown and his focus has improved already.
I was hoping you would speak about the long-term results of treatment plans that have come about as a result of NT testing, especially for kids like mine, who do not respond well to traditional treatments. As you know, my son’s NT results revealed specifically why none of the stimulant meds worked for him. I’m beginning to understand (as much as a non-medical person can) the “what” and the “why” of my son’s brain function.
Regarding food – I’ve long been a healthy eater, but since my son was such a picky eater, I fell short on getting the right foods in him. We had so many battles, I often “gave in” when it came to food. Now that I know how foods can affect him, particularly milk protein, I’m committed to being far more diligent about his diet. Fortunately, we have a Whole Foods which has many good-tasting, organic products that my son actually likes. I’m willing to spend the extra money if it means a healthier, happier kid. In fact, the entire family is feeling better since eliminating many of the preservatives and additives from our daily foods.
I first joined this blog on the day my son was essentially asked to leave his 1st grade private school until we could determine what was wrong with him and get him on the right medication. The school counselor even mentioned that he might have a bit of a psychosis – I remember thinking, “Is that like being a little bit pregnant!” I had the feeling that continuing to try one med after another was like changing seats on the Titanic. Regardless of our efforts, we were still going down. That’s the day I discovered Dr. Parker’s YouTube videos and was directed to this site. The NT testing was the lifeboat we needed!
Thanks again, Dr. Parker, for doing what you do! You are planting the seeds of change indeed!
Kate,
Love it when it all works as it should, and appreciate your sharing your personal experience with our readers and those interested in more comprehensive approaches that do work through understanding the evidence from additional resources.
Long term results are terrific… once the antigens, the thorns, are out of the lion’s paw, we can heal internally, and the prognosis long term is terrific. The supplements will be diminished – and some will be dropped altogether, after subsequent re-measurement.
Lucky they didn’t call him Asperger’s or Autistic, a favorite wastebasket for kids with metabolic challenges! And the Titanic metaphor works for me, been there done that – but no longer!
Thanks again,
cp
Wow, that is such wonderful news, Kate.
It breaks my heart that so many children (and adults) will never find these kinds of solutions. What a tragic waste.
Gina,
Same thoughts over here… When I am riding around the country doing presentations I look at those ‘challenged’ homes, either up in the Smoky Mountains, or down by the river in the Ohio farmlands, and think of those we are missing, – and keep thinking of ways to connect them with this useful info. Yes we will do a program on these matters!
cp
Yes, exactly, Dr. P.
And I also think of kids in the well-heeled cities or even here in Silicon Valley, with the all-pasta and dairy diets, etc. Oy.
g
Information moves faster than the speed of light, but belief systems change very slowly. I read a quote the other day by George Patton: “If everyone is thinking alike, then somebody isn’t thinking.” If that doesn’t ring true with regard to this stuff, then how else do you explain it?
Thanks Gina – I enjoy your posts.
Dr. Parker,
I have a 7 year old almost 8 year old son who has been diagnosed with severe ADHD since he was 5. We had suspected he was ADHD but they would not consider any testing etc until he was 5 years of age. For the past 2 years we have worked with several medications that have shown some symptoms control however my son has adverse reactions some severe including high blood pressure with most stimulants. We have also discovered on our journey that my son has a very fast metabolism in which any medications he takes tends to only last between 2-4 hour at the most especially long acting or extended release type medications. We have been through doctors galore finally found one we can relate to that will listen to us and focus on the problems. Main problems with our son is morning temper getting him just going in the morning, overall meanness for no reason and unable to focus and sit still all the time. Very defiant at times. He is an overall sweet, intelligent boy who when he can focus is just loving and the most sincere boy. We have had him on Vyvanse 30mg 2x per day for the past 6 months, in which it seems to control most of his symptoms however it’s a tune in process… poor baby just weeks prior to Christmas break started with more symptoms of outbursts and unable to focus. His grades started slipping again. Dr decided to place him on Intuniv along with his Vyvance therapy 2x per day as a test to see if this would work. Sure enough we started to see things calm down, he was able to focus, first time I ever even on the Vyvance see him put together an entire Lego set in one sitting. I am truely amazed. School even reports he has greatly improved and they are proud to report he is one of the better students in the class right now. Grades, writing and just over all paying attention has greatly improved. However there is a large concern with us that he is taking too much medication. We worry constantly about blood pressure due to all of his prior meds and his reactions to meds. We are kind of reserved but hopeful this is going to be the true therapy that helps him now that we are seeing good results we want to believe it will be the key to his own success and be a true success story. My question for you is that we had discussed possibility of taking him off Vyvance or reducing it to 1x per day or only taking Intuniv to see how it will work. I wanted to know have you had any cases where someone has only taken Intuniv and has done as well. I know every child is different, again we worry he takes too many meds all the time. Any information would be greatly helpful. Thank you.
Kris –
You are recording clear metabolic problems that need more careful review to discover the specific underlying problems – these are the markers:
1. Adverse reactions, severe, with HBP.
2. Markedly odd metabolic rate – this is covered carefully in my new book.
3. Vyvanse DOE good, then appears to deteriorate – Vyvanse rarely needs adjustment unless associated with a moving Therapeutic Window, secondary to metabolic issues.
4. Intuniv is often surprisingly helpful, does cover a different neurotransmitter system: glutamate.
To answer your two bottom line questions – but am not recommending either as I am not there, and those issues are for you and your doc:
1. No problem using the two together.
2. I have had good results [with some] going over only to monotherapy, as have my research colleagues – noted in several other answers to other comments here.
If you remain in any kind of quandary don’t hesitate to get more testing – many other options can become useful when you have more comprehensive information.
cp
I posted a month or so ago just as my daughter was beginning the Intuniv journey. We are currently on our 4th week of 3 mg of Intuniv (we have not tried 4 mg). The major angry, irritable, irritating behavioral stuff is markedly decreased. She does not get sleepy during the day, etc. However, she seems REALLY forgetful and is having some major issues with reading comprehension, which have always been an issue, but are severe right now. She also seems somewhat unmotivated to do things that normally bring her pleasure. There has also been more night waking, which previously was not an issue.
I don’t think I’d mentioned before that my daughter also has Asperger’s and during her SPECT testing, was found to be in the 99th percentile of severity with the ADHD (Ring of Fire at that!) She is on some other meds, one of which (Celexa) we’d started a week or so before the Intuniv.
The meds my daughter uses are 63 of Concerta, 150 of Lamictal (for the ring of fire moods), 10 mg Celexa and 3 mg Intuniv. I have been vascillating between 63 and 54 on the Concerta and am not sure if that is the cause of her reading and motivation issues or if she is just on too many meds in general. I tried 36 one day and it was if she was on no Concerta–not good. I am resigned to the fact, that due to my daughter’s complex issues, we will not achieve good function with monotherapy, but the current situation seems not to be working as well as I’d like either. We also use fish oils, good vites, other supplements to help support her. I am most wondering about the necessity of the Lamictal.
Do you have any input of ideas I could mention to her doctor? I’m not sure where to start, but yet don’t want her yanked off a med that might work with a little tweaking. My doctor is excellent about listening and advising, but I’m not sure what to even ask at this point.
Thank you for your time.
Cally
Cally,
Remember: “Ring of Fire” is an Amen term, having to do with the underlying diffuse cortical hyperperfusion, the term I prefer, as do the rest of the nuclear medicine docs – because it tells you something specific about brain function, is not purely descriptive [dealing with brain appearances], and clearly diminishes the evocative response with patients. Yes, my term is more technical, but that hypermetabolic state tells us something about what we can do next.
My experience, having seen many hypermetabolic brains with their owners [and repeatedly seen this conundrum following SPECT brain imaging with Amen’s offices] is that these folks all need the next step after SPECT: specific neurotransmitter {NT] testing. Now I can predict with some certainty that the excitatory neurotransmitters will be high, that’s easy after seeing the SPECT hyperperfusion, but your most informed and clinically useful metabolic information will be: specifically which of those excitatory NTs are up, and, most importantly, where is my new friend, urinary histamine. It will likely be up, but, even if it isn’t, the inevitable imbalances will give you multiple options to address that will help the pharma do it’s job.
If histamine is up, IgG4 testing will be in order and from there you can take even more specific action with offending food antigens identified therein. Neuroscience evidence changes thinking! Deeper, more accurate neuroscience evidence is your next step – then the meds and much more will become more self evident.
BTW, if that next step proves confusing or non-responsive there are several other very interesting tests available which require a bit more explanation [due to evolved understanding of cellular physiology] for even more challenging presentations.
Bottom line, more testing, not more meds at this moment from my chair in this office.
cp
Thank you Dr Parker!
As a matter of fact, we did NeuroScience testing back in 2006 with the following out of range results: Serotonin low (113.5 with a rr of 175-225), GABA high (6.2 with rr of 1.5-4.0), Glutamine high (1483.7 with rr of 150-400), Glutamate high (37.1, rr 10-25), PEA high (863.8, rr 175-350), Histamine high (42.4, rr 10-25).
I know these results are very old, but what direction would those send you if they were current? I suppose I need to redo all the testing and go from there. Back in 1996 I did try the products recommended to address my dd’s results but unfortunately we saw no results and it was SUCH a struggle to use the sprays (my daughter’s sense of taste is so exquisitely sensitive) that after a couple of months of no real changes, I gave up.
I do realize that a lot more study has been done since 2006, so perhaps we’d have better luck now. You’ve given me much to think about with your reply.
Thank you.
Cally
Cally,
The more I do NT testing the more I jump to Histamine levels first when a quick look at the numbers indicates significant global disarray with many of the others. This hist level is ‘out the roof,’ way out of the top of the range of ‘normal’ no matter when it was first read – and should be followed up soon with a Food Sensitivities test – focused on the IgG4 antibodies to get the basic foods out of the way.
Yes, 4 years could herald a significant change in the numbers, and a redo is quite in order, but will very likely reveal little improvement in that hist level. Histamine is a prime marker for immune dysfunction, and often associated with leaky gut which changes nutrition and regularly diminishes amino acid levels.
If the sprays are a problem you need more options… and there are several, depending on what your current findings are – wouldn’t recommend just using those old results if you plan specific intervention.
cp
Thanks again Dr Parker,
You have no idea how much I am appreciating your input right now. I hate imposing on your time, but I feel it is so important right now, and don’t have another place to turn at the moment.
We have been working on my dd’s gut issues since she was 3. She was on the gluten free/casein free diet for 3.5 years, has had extensive allergy testing/treatment from the Block Center in Texas, as well as other more alternative treatments for food allergies, for which there was a looooong list. We have done many “gut protocols” along the way and do in fact still use probiotics, and biomdedical treatments to address the gut etc. In the last few years, the severe eczema and “asthma cough” have all but disappeared, although I’m not smug enough to think everything is resolved.
Which NeuroScience panel would you recommend we use at this point? I do plan to pursue this further as I am fully committed to helping my daughter be as comfortable and successful as possible.
Thank you.
Cally
Cally,
When you report that you have had many more tests over the years, then I back off from simple, more basic, approaches, – and start to consider bigger, more comprehensive approaches. Neuroscience has 110 food sensitivity, it’s a blood study, but honestly, when you have a multiplicity of issues, I would turn to the Triad with Metametrix, recently updated on the Neuroscience page, with some excellent educational links there. The Triad covers nutrition and the downstream effects of the immune function. Also might consider the more expensive but useful ELISA testing noted on the Useful References page. I like the Triad first, and you could do the bloodspot as it would be significantly easier than finding a blood draw site.
Simply said: I would have to know more to give you better specifics on where to turn next.. but these are some suggestions that do provide additional information.
cp
Dr. Parker,
Perhaps some readers don’t realize that you offer consulting services by phone. I know you do this with the various NeuroScience testing, but I’m not sure how far you go into other treatment issues. Do you prefer that people work with a local physician, who would receive copies of these reports, or do you actually offer full consulting services via telephone?
In my advocacy work, I hear from people all over the country (and the world), and I know that many people face very limited medical choices in their communities, especially with complex ADHD+ cases. It can be a pretty desperate situation.
thanks,
Gina
Gina,
Appreciate your asking! Yes, I do provide consultation by phone – diagnosis, lab testing, and recommendations that won’t create a problem with crossing boundaries medically. For the medical piece we do everything we can to work with the doc on site. Some do come out to Va Beach so that I can write the meds, but most often meds aren’t the underlying problem. With questionnaires and testing + a phone review, we can suggest a number of additional interventions – for ADHD and the other issues such as immune dysregulation and hormone balance – just can’t write for meds unless seen in Va Beach.
With the testing it often becomes quite obvious why meds aren’t working as expected – because hard evidence lives below what others are testing.
Best to simply drop an email to Caitlin on the Services page, and we can set up anyone interested in comprehensive discussion of the problems.
cp
PS: Will be providing a cost saving opportunity to those who attend the Virtual Holistic Conference on first consultations. Thanks again…
Dr Parker,
I had some nice exchanges with you a month ago regarding my daughter’s wild NS results from 4 years ago:
Serotonin low (113.5 with a rr of 175-225), GABA high (6.2 with rr of 1.5-4.0), Glutamine high (1483.7 with rr of 150-400), Glutamate high (37.1, rr 10-25), PEA high (863.8, rr 175-350), Histamine high (42.4, rr 10-25).
You were particularly concerned with the histamine. I redid the tests and got the results this afternoon:
Epinephrine, L-8.9; Norepinephrine, L 13.0; Dopamine, Optimal 158.7, Serotonin, L-78.2; Glycine, Optimal 979; GABA, Optimal 2.9; Glutamate, Optimal 32.3; PEA, Optimal 61.9; Histamine, Optimal 18.3.
As you can see—almost a completely different result. NS recommended Tyrosine spray, AdreCor and Serene. I have a few questions, though. Would it be safe to add the 5 HTP in a child who is already on 10mg of Celexa? Also, could I use Tyrosine caps instead of spray as my daughter has an exquisitely sensitive palate, which was an issue the last time we tried the sprays? Finally, my daughter is already on all the vitamins in the AdreCor (Kirkman Labs Nu Thera with P5P, plus nasal methyl B12 spray) so I see little point in adding more multi vites. How significant are the few aminos that are listed as part of the ingredients? Could I simply add those in as separate supplements (I own a supplement business for kids with ASD disorders so acquiring these are no problem for me.)
Any guidance is greatly appreciated. I must say it was nice to get some testing back that wasn’t a total trainwreck! Also, we are LOVING the Intuniv! No longer do we have a monster living in our house! And reading scores have gone WAY WAY WAAAAAAAAAY UP! We’re loving it.
Thanks again,
Cally
Cally,
I won’t have time to cover all the details, but in short, I do start any review by focusing on a high Histamine – at that level [42.4] you have to get with the immunity issues. So what exactly were her immunity issues, what testing did you do, and how did you resolve the challenges over time?
The 5HTP spray can be mixed with the Celexa, yet therein lies the rub. As soon as you mix the NTs with the regular meds, whoever is watching must be completely informed about interaction/accumulation possibilities. I have mixed them carefully, know that others do, and don’t worry about serotonin syndrome when there is no serotonin! On the other hand, I do strongly recommend watching any children, especially the ASD folks for dysregulations that can precipitate regressions. This is the same procedure as any medication augmentation strategy.
I have one ASD child who comes to mind with several different meds including Intuniv, a stimulant and a small dose of antidepressant [likely Celexa] – and as we have trimmed up the NTs we have seen side effects from the other meds, as if they are overdosed, with the result we have been able to significantly modify the treatment with the psych meds. which often appear less forgiving than the NTs.
The few aminos in the side ingredients: Not a problem, not enough for concern, but just enough for some positive effect.
Glad the Intuniv is working! As I indicated elsewhere it looks like Intuniv does have some special benefit for ASD kids, and have seen the progress with those in my office as well. Thanks for getting back with us.
cp
I was wondering what your thoughts were on concerta and intuniv given together…my son is on 2 mg of intuniv and 18 mg of concerta…..is it too much medication; he has been having some rapid blinking and he has been complaining of headaches….it this normal…he has only been on this for 2 weeks and he seems to want to take it before he goes to school…he is 12 years old and he says it is helping but I am worried about the side effects and if he really needs to be on 2 ADHD meds…thanks
Sue,
Regrettably there are no rules here that apply in every case, and there are way to many issues flying around in this kind of situation to offer specific cogent advice.
On a larger scale: these meds together are not a problem. Tics with blinking are more likely Concerta than Intuniv, as we have been using guanfacine, the Intuniv parent compound, to treat tics for years. Suggest you call your doc, but don’t worry about the two meds. There are no interactions between those two, and in many cases togetherness seems helpful.
cp
I am new to this site, and really looking for some answers. My son is ten years old and has been on Concerta, 54mg, for primarily inattentive ADD. He does not have any oppostional behaviors, ODD, anxiety, tics, etc. His doctor wanted to switch him to Intuniv due to his weight– he is a skinny guy. To be honest with you, I was very skeptical about a non-stimulant being effective for him. He started the 1mg nightly Intuniv a few weeks ago, and returned to school this week. I informed his teacher of the change, and asked for feedback. To my surprise, she stated she could not tell a difference between his being medicated on the Concerta and on the Intuniv. He seems a little keyed up and unfocused to me at home, but maybe he is better at pulling it together in school now that he is getting older. I relayed this to his doctor, who is keeping him at the 1mg. I guess I am still skeptical that this medication could be doing the trick. Is it likely that only 1mg is this effective? He is about five foot three inches tall, so not a small kid. He went on the Concerta in thrid grade, when he was having extreme difficulty staying caught up, and the Conerta made a night and day difference for him.
Hilary,
Actually way too soon to tell on the Intuniv start – time will tell. Just a quick reminder: Intuniv clearly showed an excellent response for ADD symptoms alone – e.g. inattention. It’s not necessary to have the ‘mandatory’ ODD subset of symptoms for Intuniv to show an effective response. And the dose question: Same answer – time will tell. Weight guidelines are just that – guidelines not gospel. Take a look at this CorePsych Blog post on Intuniv Dosing for more info that might prove useful.
And do not forget the Protein Breakfast! 😉
cp
Hilary,
It’s the primarily inattentive kids that teachers seem to overlook. With children whose ADHD presents more obviously and physically (not sitting still, blurting out answers, etc.), the difference between being on medication and off is more obvious.
If you haven’t already thought of this — and you probably have! — it’s something to consider.
At least, you could try some more objective “tests” at home — asking him to play a game that requires more focus, for example — and get more data.
As for the weight concerns, I’m betting Dr. Parker has written elsewhere on his blog how these can be often be addressed while on a stimulant. There is a TON of information on this blog (including radio podcasts, etc.). It staggers the mind! lol!
gina
Gina,
Thanks for weighing in on this subject – and reminding me to note one ‘medical’ intervention I have regularly used in the past: Periactin at 4mg 1/2 – 1 at bed. From children to old folks in nursing homes it will safely get the appetite going, and often is only needed for awhile whilst the appetite shifts back to the ‘on’ position. Thanks for reminding me about that one.
cp
Great tip!
I’ve never understood why children on the stimulants lose weight when none of the adults I know do. I’ve often wondered if the dose is simply too high for the children and they aren’t able to give the kind of feedback that would indicate it.
Gina,
My take on this childhood comparison to adults: I think kids complain, and manipulate breakfast, and food much more than most realize, and parents don’t have solid alternatives for breakfast. As Michael Pollan points out: we are not paying attention to the long term consequences of dietary speed. No/little food at breakfast = gastric irritation = appetite suppression and a buzzy feeling – even with Vyvanse. Kids start young with their picky eating, do have significant allergies to the junk we are feeding, and very often go completely overlooked – until the flame-out is obvious.
Incidentally: will be covering this during my presentation at the Virtual Holistic Conf with Hyman, Amen and many other outstanding presenters [Jan 26 & 27] – very soon! . Tomorrow I will be recording a podcast of my agenda with Jennifer Koretsky the hostess there, so drop over to hear that review soon – probably up by Thursday 1-14.
My brief take on these matters: Medical professionals are lost in a profusion of innuendo, frank name calling and finger pointing about who is right regarding the correct approach many chronic illnesses, including ADHD. The functional folks say the traditional docs are daft, and the traditional docs who practice paleolithic medicine disdain the functional med docs as quacks. New brain and body science makes it simple: both are right, and both can be completely wrong. The answer is simple: measure carefully, prescribe specifically. Sorry, getting on my soapbox prematurely… – and I will be outlining specific ways traditional docs can measure variables more precisely during my presentation at the Holistic Conf.
Hyman is a world famous functional medicine doc with a balanced view of matters. Amen is a traditional doc who uses new technology to watch brain function through imaging, and I am a traditional doc who has his feet planed firmly in both camps: brain imaging, functional medicine measurements with advanced micro laboratory techniques, and traditional psych meds – looking for what works best, period… holistic evidence provides holistic solutions. Neuroscience evidence changes thinking.
And Gina, yes, kids often aren’t able to give good feedback, especially to those who don’t provide a format to evolve the discussion during evaluation and treatment.
cp
Thanks for the feedback. We have been doing the high protein breakfasts and fish oils for years, and he typically eats very well. Here is an update– he went back to the doctor this week, and has gained FIVE pounds off the stimulant, which is wonderful. His teacher, who states she is paying special attention and watching him, indicates he is still doing well. He seems energetic and sometimes hyper at home, but is apparently pulling it together in settings where he needs to. I never thought he would do so well on a non-stimulant. He is still only on 1mg, and it is week four.
Hey Hillary-
Great news, and high five on the breakfast protein!
cp
Dr. Parker – It was a pleasure and a privilege to discuss my son with you. I feel energized about Jack’s prognosis and can’t wait to begin the interventions we discussed. To bring those following this string into the fold, Jack’s NT test showed an imbalance in his NTs that are more indicative of an auto-immune problem, which is likely causing his ADHD symptoms. Upon hanging up with Dr. Parker, I was struck by how my new-found knowledge quickly changed my view and understanding of ADHD. I always thought of ADHD as having a single cause, but due to variances in metabolism and personality, each person responded differently to treatment(s). My new understanding is that there is a group of common symptoms, with a wide variation of causes that can now be identified and treated in a more targeted approach. According to Dr. Parker’s (please correct me if I’m wrong) interpretation of Jack’s NT test results, his neurotransmitter imbalance is resulting from an auto-immune problem which will very likely resolve with specific changes to his diet and by adding very specific natural supplements to his daily routine. In fact, Jack’s test results helped to explain why he cannot tolerate stimulants and perhaps why the Intuniv is helping. The good news – there is much more we can do to improve Jack’s well being. I can’t wait to turn the page on this very long chapter in my little guy’s life. I highly recommend the NT testing if you desire more precise answers and better solutions. I must say that for the first time ever, the “dots” are connecting and I can see the bigger picture. It’s nothing short of amazing! It is stunning that this information is still not embraced more fully by the medical community at large. I will continue to post on Jack’s progress in an effort to do my part to shed light on the subject. Thanks again Dr. Parker – your enthusiasm about and respect for the patient as a whole person, is both refreshing and inspiring.
Kate,
Thanks for the update here – it’s so much fun everyday sorting out the variables in complex individuals with so much promise as the Jack guy. And with an informed Mom such as you… his prognosis is excellent with the facts that we now have. Just a little more info and I expect we can nail it.
You got it exactly right – his elevated Histamine [up in immune dysfunction], the subtlety of his real GI issues, his Dopamine excess without AMP stimulants and his overall dysregulation with the other neurotransmitters encourages more careful immune review – with the Food Sensitivity panel for 110 foods. I did guess that it is Gluten, could be Casein, as those are the most frequent problems we see, and the most common foods with allergenic reactions. Time will tell.
I very much look forward to our next visit! Thanks for weighing in and sharing your experience with our readers!
cp
Thanks for sharing your progress with other readers, Kate. I wish you and your son the best in continued progress.
Dr. Parker, on the point of immune-system reactions, etc., I have a question, when you have a minute.
From my amateur observation, it seems that there’s a higher incidence of allergic sensitivities in the ADHD population. How do we know that the symptoms are secondary to an immune-system reaction vs. the ADHD neurobiology itself CAUSING an immune system reaction — that is, overinterpreting the threat of the allergens?
I’ve also seen a decrease in my husband’s allergies and physical sensitivities (to clothing tags, etc with magnesium supplementation. Years ago, I was visiting a house of a nutritionist when I had a severe allergic attack to his cat. He mixed up a drink of magnesium and juice for me. I drank it politely, fully expecting no relief from the sneezing and itchy eyes. But it worked almost immediately.
Gina
Hey Gina,
Nope you are no amateur, – having heard all of this so often!
My take on the question: Two amazing observations: ADHD is completely under diagnosed, you know that – and the reason is that we still aren’t asking the questions about function. Currently questions are vertically delivered from an observation tower at the airport rather than reported from the flight deck itself with the dials all working. Second point on your question…. sure seems that way. So many overlooked on both subsets.
My new criteria is this: Some just turn around dramatically easily with ADHD once discovered – and no problem, they are out of the office and into our 3 mo med check protocol. The hard ones… they are the neurotransmitter measurement folks – and of those, immune dysregulation is high up there as comorbid fer sure, and possibly primary. We have been dropping med doses as we work out the other comorbid problems, so too early to tell if actually causal. Probably should run a study on fresh patients, break them out on the some specific refractory criteria, test them and run down the details, would be great fun and just might be helpful!
Very interesting question Gina, have a great week!
cp
Thanks Dr. Parker. I appreciate your taking the time (again!) to explain that. Makes perfect sense.
g
Thanks Gina – I always enjoy your comments. I feel like we’re finally getting on track with Jack.
My 7-year-old son, Jack, is now at 61/2 weeks on Intuniv. We are staying at 2mg and he has finally made it past the extreme groggy phase! Jack has ADHD with extreme oppositional/impulsive behaviors. We had very little luck on the stimulants and we were running out of options. We tried Strattera and it seemed to push him into a far more negative state so Intuniv was the next in line, so to speak. As each week passes and the side effects dissipate, I am beginning to see more balance in Jack’s ability to cope with life – on life’s terms. For the first time ever, he seems to have the ability to choose “how” to react when things do not go his way. We have a long way to go, but I do sense that we’re on the right track. The Intuniv is definitely a slower process than a stimulant, so the jury is still out. That said, I feel as though we are moving forward after many years of spinning our wheels or moving backwards. Those of us raising ADHD kids, especially the tough cases, tend to hold our breath with each new treatment since success seems to elude us. As for the NT test, I will be talking to Dr. Parker about Jack’s results later today. I am hopeful that his input will shed more light on Jack’s particular challenges. I will keep everyone posted once we know more. This sight has been a blessing for our family. In an age of “too much information” it’s hard to know who to trust. Corepsych and Dr. Amen’s site are tops!
Kate,
Thanks for the opportunity to discuss Jack – naturally I won’t discuss the issues here, and will leave that to you if you wish. Bottom line: Very interesting example of more-than-meets-the-eye. Now it will be interesting to see how this next intervention process works out!
Great talking to you!
cp
Hi there:
I wanted to post an update about our Intuniv experince. I posted before Christmas about how worried I was about the grogginess when we increased to 2mg. I am happy to report that the extreme grogginess is all but gone. It did take longer on the 2mg to get over the tired “hump” (about 4 days with 1mg, a full 7 days on 2mg). She is back to her old self… actually has been waking up in the middle of the night lately. Also, we are beginning to see impulsive and hyperactive behaviour rear it’s ugly head. But, it’s also been two weeks off of school with cabin fever. So, we are going to stick with Intuniv 2mg for a couple of more weeks and talk with the teacher about how it is working in the classroom. Our main issue is still impulse control and hyperactivity. Inattention is less of an issue. Our Psych wants to move to Strattera next (if we decided Intuniv is not effective in the classroom). But I keep reading negative reports about it. Will stimulants (like the patch I keep reading about) help with impulse control and hyperactivity, or are they more for inattentive types. Thanks for this blog. I will continue to report our progress, since I do not see a lot of information out there about intuniv.
Brandy Smith
Brandy,
Thanks for the update. My first choice for ADHD remains Vyvanse, and you can find much info here by simply Searching Vyvanse here. The patch is good from the DOE point of view, and is a good second choice. I have a post up on Daytrana patch as well with specific suggestions about that product – more than a year ago. Strattera is a third choice for me, having failed everything else, – and for complicated situations with poor response I always look at her neurotransmitters. A little evidence always goes a long way.
Glad it’s working better for your girl… best wishes,
cp
Hi Brandy and Dr.Parker,
My son has had side affects every time he went up a mg. Usually only lasted about 4-5 days and we were back to normal. Lower doses mostly just sleepiness, and a little dry mouth. When we went to 3mg he had a tummy ache the first couple days. All went away. It’s funny, my Doc wants to try Strattera as well, if Intuniv doesn’t work. Dr.Parker gave a nice reply to me about Strattera on this site that you may want to look up. I am not real keen on trying it either. I will have to talk to my Doc more on why the Strattera route next. As I noted in a previous post it may be because he knows I am also leary of stimulants. After more research though, I am willing to try them. We did not see a thing on 1mg or 2mg. On 3mg I have seen “windows” of improvement but nothing major. We just started 4mg last night. (son is 11yrs, 70lbs). I sure hope it works. Dr.Parker, I did talk to my Doc about NT’s. He doesn’t believe that we have the ability to actually measure them. I can’t really articulate his reasoning, but something about that we can’t really capture or measure them…I didn’t really get much further with him on that. Anyway, thank you again Dr.Parker for this forum and blog! Best wishes Brandy.
Denise
Denise,
Thanks for trying with your doc – he might like the ‘Biomarker’ pdf at the CorePsych Blog Neuroscience page – he is working under the impression that many have regarding the idea that biomarkers are not effective, and misses the fact that he is using biomarkers everyday for C Reactive Protein, Cholesterol etc. The neurotransmitter findings are beyond ‘belief’ and have merit, are useful, not diagnostic, and are helping people, so why not use them?
Sounds like you are rethinking stimulants – good idea, and they can be used, as your doc knows with Intuniv – I have found that often the stim dose can be lowered and just a slight augmentation can turn the tide.
cp
Hello Dr, I stumbled across your wonderful blog in my Internet search for Intuniv side effects. Found your expertise and comments board helpful with my 6 y/o hyperactive, impulsive son (smart and sweet, but non-stop active!).
His psychiatrist suggested we try the starter pack over the holidays for one month to see if it helps curb his hyper behavior that gets him in trouble at home and at school. He’s been on it for 2 weeks tomorrow. Below are results to date:
Week 1 – 1 mg tablets. We saw great improvement in hyper-impulsive behavior. His personality didn’t change, he seemed more focused and told us the medication helped him “be good.” The family noticed how calm and focused he was when they were in town, especially with change and in large groups (where he usually goes bonkers). Downside – he seemed more tired. Fell asleep in the car a lot. Not too troublesome.
Week 2 – he has one more 2 mg tablet to finish up tomorrow, then we have an RX for a 2 week supply of this dosage due to his weight requirement.
Here’s my concern — All was well until tonight. He was on the floor playing and jumped up in severe head pain. He told me he had a terrible headache “all over his head,” a strong stomach ache and felt like vomiting. He never has these issues so seemed to be in a panic about it. It really has me worried. I took his temp, it was 95. No fever. He ate normal, had normal bowel movements and is not dehydrated. Makes me wonder if I should quit the medication all together … what do you think?
Note — He was recently on 5 mg of Adderall. It helped some but he crashed hard when it wore off. He also had significant decrease in appetite and moodiness. He also took Ritalin and it didn’t work for him.
Thanks in advance for your professional input!
Sincerely,
Cristina Lucas
Christina,
Crashing happens more often with Adderall [especially IR], – you didn’t specify if it was XR, which has less drop in the PM. Appetite issues can occur with any of the stimulant medications, since you are new to CorePsych Blog Search: ‘breakfast’ for more details. When any one says ‘it didn’t work’ I always dig in further to see if the dose was adjusted accordingly all spelled out if you search: DOE here.
While headaches and nausea are listed in side effects, I would pay more attention to the Top of the Window with Intuniv Dosing at this other CorePsych Blog Post. Bottom line: he appeared to be having some side effects on the 1 mg, my suggestion to consider with your medical team: go even more slowly, don’t advance until that first tiredness effect has diminished, then advance as indicated. If you notice comments here and on the other dosing post most are having trouble simply going to fast relative to the side effects of that first dose.
My take at this moment: it’s not Intuniv, it’s the dosing strategy moving too fast.
cp
Thanks for your response, Dr. Parker. To answer your question — my son was on 10 mg generic amphetamine for a bit. While on it, he was moody and hypersensitive so his psychiatrist lowered the dosage to 5 mg. It worked for awhile (improved control), but eventually had him crashing hard. In short, everyone knew when it wore off. It was obvious by his radical change in behavior later in the evenings. My guess is that it wasn’t an extended release version of Adderall, but I honestly don’t know.
I will check out your suggested search areas on the CorePsych Blog. What a valuable resource you offer! I plan to add your Web page to my favorites.
Re: Intuniv. We went ahead and lowered the dose back down to 1 mg by halving the 2 mg pills. Did it yesterday and heard no complaints of headache, tummy aches or nausea. I wonder if it was because of the lowered dosage. We’ll see how he progresses with this dose for the month his dr recommended. One final question – is it ok to give Motrin for a headache on Intuniv? If he gets another bad headache I want to help him, but am wary of adverse reactions.
Thanks again for all you do. Happy New Year.
Cristina
Cristina –
No problem with Motrin [which blocks UGT2B7], not involved with Intuniv metabolism.
The Adderall XR is capsule, the IR is tablet. If he was on the tablet, as it sounds like he was, the drop in the PM from only an AM dose will almost always become problematic.
Thanks, sounds like you and your doc are on it!
cp
Oh good. Glad to hear Motrin is ok to take on Intuniv. Thanks for confirming, Dr. Parker.
The Adderall is in tablet form so is the IR version. Makes sense now why he crashed in the evenings on it. Not a good mix for him or anyone in the house. I’m hoping Intuniv is the right med for our little guy, especially in reading some of the good comments on this board. We’ll soon find out. Thanks again! ~Cristina
Hi Cristina,
Congrats for finding Dr. Parker’s blog — it’s the best source on the Internet (or really anywhere) for this rare blend of cutting-edge information on medications, metabolic issues, neurotransmitter precursors and much much more.
It sounds like your boy might have been taking a generic — which can add its own set of complications.
You might be interested in the blog post I wrote on generic medications recently (as well as its references to a news article and a woefully misinformed conclusion by Consumer Reports on medications for ADHD).
http://adhdrollercoaster.org/adhd-medication/update-on-generic-rx-approach-with-caution/
Best,
Gina Pera, author
Is It You, Me, or Adult A.D.D.?
Gina,
Thanks so much for your comment, it’s always reassuring to find others concerned about the same issues, and that can take that concern and those issues into informed, experienced observations that have street applications. I strongly recommend that readers here not only read this post by Gina, but be sure to hook up with her regular blog posts. Gina provides a significant voice of reason in a sea of folk who seem to either worry what pharma will think, or academia will think, but just don’t get down to what the public needs to know to get the job done. Reading Gina on ADHD [four National Book Awards] will provide a voice of reason and experience, – as she has been listening and researching these matters for years. Then she takes the time to regularly report the unvarnished observations in her book and blog posts. Feedback loops are her specialty.
cp
Hi Dr. Parker,
We have corresponded before. My son is the one with high glutamate levels on his NT tests. The Doc moved him upto 3mg from 2 mg of Intuniv. He’s been on the new dose for about a week and a half. Still no improvement. The Doc wants to try Strattera next, I think part of the reason is that he knows I’m nervous about stimulants. I noticed that you are not a fan of Strattera. I searched your blog to see if you had written anything as to why, and was unable to find it. Would you mind sharing why? My son is only about 68 pounds. Wondering if we should try 4mg Intuniv, or just give up on Intuniv…
Thanks!
Denise
Denise,
Everyday in the office I am searching for efficacy and predictability, and always start with the best on both counts. Strattera, while not a stimulant, often just does not turn the ADHD tide, – and, moreover, often brings an unpredictable side effect profile. I had one girl fall asleep in the girls bathroom! They thot she had run away, called the police, and, much later, found her snoozing on the cold tile bathroom floor. Yes, that is only one case, but tiredness and agitation do occur, so watch if you and your team go that Strattera route.
Most importantly: It just doesn’t do the job as well – and we often have trouble dialing it in effectively with vague parameters of effectiveness. I have heard so often: ‘I took it and didn’t feel anything.’ The stimulants can have their own problems but are safe, efficacious, and predictable. I just don’t have problems with folks who are cooperative, unless they do have NT issues – picky eater, IBS, constipation, metabolic challenges.
Having said that, just met a patient yesterday briefly in the hall, an adult woman, refractory to my favorite stimulants, and she was raving delightfully about Strattera’s ability to help her focus ‘so much better.’ About 5% of folks just don’t work with the stimulants, [and this finding is confirmed by many colleagues across the USA with whom I have had this conversation], and that crew seems to be the crew that responds best to the Strattera – thus it becomes the fall back choice – absent good NT info.
On the NT side: Look at the guys Histamine for sure! I have seen so many, even with a Histamine at 21 that test positive on the food sensitivity panel, and straighten out when the immune challenges are corrected. Stimulants often don’t work as the excitatory/reactive Histamine crowd have taken over, and targeted amino acids simply don’t work on a rusty bowel – they simply aren’t metabolized.
And I would stay for a complete trial on the Intuniv up to 4 mg, if you aren’t having any side effects.
Please keep us posted-
cp
What is the cost of Intuniv? And is there any preliminary evidence it works in adults or any theories whether adults would benefit. Also, short acting cheap form of the drug peaks 2.5 hours after oral dose with antihypertensive effects persisting 24 hours. I guess I am asking if Guanfacine ER is really necessary or is plain guanfacine just as good (other than being a little more like to cause side effects.
I have ADD and hypertension, so this might take the place of another med. Thanks, Bill
Bill,
Interestingly, the Intuniv does appear to act as a significantly different, more predictable, medication with fewer side effects. In conversations with researchers who have used IR guanfacine far more than I, even before the Intuniv was available, they all agreed that it surprised them as well. The had expected less than they got in terms of correcting both the attention and the irritability, as I mentioned in one of these Intuniv posts, even through the next AM [fitting with your 24 hr notes on the hypertension].
Sorry Bill, I should know, but don’t, the $ on the Intuniv – so much varies, as you know, with each managed care plan. Some simply won’t pay for it because it’s new – and some over there are way behind on the education curve – but don’t get me started.
I have had some surprising turnarounds in my office, even at the lower doses, and am continuing to find the formula for individualized titration predictability. For now am goint with the suggestions from Shire, have had no big problems, and see more in these questions here than I have seen in my office.
Hope this helps, please keep us posted… and no, – no adult studies out yet, but the anecdotal, both from colleagues and my office medical team, is that it has worked well, with the usual cautionary notes about not mixing HBP meds.
cp
My son is 8 years old. For the last 3 years we have had so much trouble with him both at home and at school. He is OCD with symptoms of ODD, verbal and motor tics, generalized anxiety, extreme impulsivity, and many other symptoms of ADD. He has been fully tested and has primary trouble with working memory. We have tried everything in this time: diets of all kinds, omega-3 fatty acids, behavioral therapy, etc. in a “natural” attempt to help him. He is extrememly bright, creative, and very sweet until he gets frustrated or agitated, which was constant daily occurence. His anxiety at school or any group setting such as soccer or parties was horrible to see. He has been suspended from school three times for serious aggression (kicking, biting, scratching) towards teachers and was not capable of finishing his daily work at his Montessori school. We were on a road to expulsion and had been asked by both the school counselor and our personal therapist to go to a child psychiatrist to test for bipolar or even childhood schizophrenia. We started Strattera about 8 months ago and saw a little improvement in his mornings at school but nothing to shout from the rooftops about.
Then we tried Intuniv on the advice of our pediatric behavioral neurologist (who by the way is wonderful and thought the theories of bipolar or schizophrenia were ridiculous) . The change in our son’s behavior has been astounding, unbelievable, amazing, and wonderful. NOW I want to shout from the rooftops. For 3 weeks now he has finally been calm, happy, and relaxed at school and at home. He no longer argues with us, his teachers, or his little sister. He is pleasant and sweet – the boy I always knew he was underneath all the symptoms that seemed so beyond his control. He walks around with a smile on his face and seems so steady. His teachers report that he finished ALL his work every day during the last 2 weeks of school (in 3 YEARS he has only ever finished his daily work about a dozen times) and seems so relaxed. His verbal and motor tics and his stuttering speech have completely disappeared. His handwriting has improved dramatically because he can actually focus on it. Yet he does not seem sedated or “drugged out”. He has energy and humor, and seems just like himself minus all that anxiety. It seems as if his true personality is finally shining through, and everyone has noticed the positive change in him.
He has had no ill effects from Intuniv save a little drowsiness at around bedtime (not a bad thing!). We will see what the long-term effects are now that he is at 3 mg. We also still go to behavioral therapy and we try every other method we can think of for helping his behavior improve. It just seems like he is able to listen to us (finally!) With the help of Intuniv.
I am usually uncomfortable giving my children any serious medication and was initially very resistant to the idea. But you have to weigh the risks with the benefits. My son’s benefits? He finally seems completely happy and comfortable in his own skin, is doing his schoolwork, is no longer kicking his teachers, and actually is playing with his classmates at school. The benefits for my family have been huge. My 3-year old daughter is no longer growing up in a house full of screaming, yelling, arguing, and constant frustration and anxiety.
For our very stressed out family, Intuniv has been nothing short of a miracle. I finally have my sweet son back after 3 painful years of struggle and anxiety.
We are going to take him off the Stattera when school resumes to see if it is still necessary. I am so hopeful that he will continue to do well on Intuniv and that it won’t suddenly stop working later down the road. It just seems too good to be true.
So no questions, just wanted to give a positive report from a real family struggling with ADD/OCD.
Carrie-
High five out to your neurologist, to your family – and to the little guy! Therapy does work much better when executive function works so the child can use the information effectively. As you know, I am no fan of Strattera, but if it is needed you need to know there are no interactions with Intuniv, and therefore no contraindications. If it works, no problem using it.
Thanks for your input – seems like the classical example of the initial indication. Do watch breakfast – encourage a protein breakfast as you are still working with neurotransmitters. And do watch bowel habits and transit time – metabolic changes can throw off the best laid plans of mice and men.
cp
Thanks for sharing your story here, Carrie.
So much Internet chatter deplores parents who “medicate” their children for the sole purpose of “controlling them” or making them “sit still at school.” The chatterers simply do not understand that many of these children are deeply unhappy, and that chronic unhappiness and disruption can destroy the entire family.
The right medication doesn’t sedate or “drug them out.” It helps them get in touch with their true desires, goals, capabilities, and feelings.
Congratulations!
g
Gina,
You are so kind on the ‘chatterers’ concept. Seems like all folks talk about is what-didn’t-work-correctly. Great to have a pro weigh in, and do look forward to increasing dialogue between health care providers!
That will have to pass for a wistful New Years Aspiration…
cp
My 8 yr old son was diagnosed with ADHD last spring. We started on Focalin XR then and it worked great until about a month ago. I was reluctant to give more stimulant (he was on 5mg twice a day) but we tried 10mg in the a.m. and 5 mg later in the day with no real change. (as an aside, I don’t know how they call this an XR – once a day dosing never worked) Our MD suggested Intuniv and we tried it. We started with 1 mg for 2 weeks with no real change – a little sleepier it seemed but that’s it. We moved to 2mg and wow – someone stole my son. Not just tired – no joy, no fun. Things that made him happy didn’t and he had no interest in life in general. I refused to add a med to combat the symptoms of the first (as depression had NEVER been an issue) and we stopped the Intuniv. He’s back to himself but we don’t have a good plan on where to go from here. I said from the beginning I would not use meds that changed his basic personality so Intuniv does not seem to be the drug for us. At home the Focalin helps in all areas and he seems ok. At school he is impulsive, “always moving” and silly. Of course we are on break right now and he’s doing well even when I have made do some schoolwork just to keep him into it. I’m a little lost right now as to what our next move will be.
Cathy,
Do take a look at Gina’s comment on this post, as it does sum up my response to this conundrum: Why not a more effective stimulant, titrated precisely so that it covers the entire day? My favorite, as you will know if you visit CorePsych Blog much, is Vyvanse. It has the benefit of working predictably – if started slowly and increased carefully. See this posting on Vyvanse dosage from about 6 mos ago. For more careful titration strategies on the front end do see the details on the post over a year ago on the Vyvanse Water Titration here as well.
A further point that appears to regularly enter the discussion on those with challenging responses to any ADHD meds: watch for metabolism issues – outlined in my white paper on the subject, downloaded at this CorePsych Blog page. The absolutely most frequent problem with any challenges on these quite predictable medications: speed of metabolism, drug interactions, breakfast and protein, and sleep, all documented here – just search these terms and they all come up.
Best of luck with your guy,
cp
Brandy,
As I read your note to Dr. Parker, it seems like the mirror image of my daughter who is 8 years old. I definitely think you should share all with your doctor. If it helps any, I will share what is so far working for us. We increased my daughters medication very slow just as you are doing. With the 1mg she was not quite herself, cranky and irritable, but I immediately saw a difference in school work and at home. Turned out she had strep throat and H1N1, so after the two weeks, the doctor recommended she go up to 2Mg. When she went up to two Mg. I felt exactly like you. It is so scary to see your child like that especially if they are usually silly and energetic as our children seem to be. After about 12 days, she slowly started to perk up… looked like my kid was back to herself. The next time we saw our doctor she placed her on Prozac, but at my request, (as we were adding another med) we kept her at 2 mg. for a month instead of two weeks. After two weeks on both Intuniv and Prozac., her doctor increased the Intuniv to 3 mg. Well, you can read the results below…not a good reaction. Please be sure to read Dr. Parkers advice about dirty meds. We took Dr. Parker’s advice and stopped the Prozac immediately. She was still very sleepy and began to seem depressed. Not sure what was going on- Dr. Parker could tell you better. Don’t know if she was having withdraw from Prozac or if she needs an anti-depressant as well as Intuniv. My (Mamma bear hunch:) was that 3mg. was too high a dose for her after the accumulation of medicine due to Prozac. With Christmas around the corner, I made a choice, along with her doctor, to back her back down to 2mg. of Intuniv. Today she is more herself than she’s been in a few weeks. It does seem to take time for my daughter to adjust to each increase in the Intuniv, but it is definily helping her ADD. I realize that I’m not qualified to offer any advice, I’m just sharing my experience as I see the similarities in our situations. Best wishes to all for Happy Holidays. Hang in there, Dr. Parker and others are offering their best advice, keep watching and listening to the experts…and keep the faith!
Sandy
Sandra,
Thanks for weighing in, and right on with the Prozac. Often the reaction doesn’t occur right off the bat, but does show over weeks or months – so simply being alert can avert downstream problems. Time is the factor: with the passage of time it seems like interactions are not the problem – but some other unexplained something is the culprit. -And you wind up guessing repeatedly. Time will show that interactions with Prozac are easily corrected.
No withdrawal from Prozac, as it only shows discontinuation syndrome very rarely, and only after being on it for an extended period. She very well may need an antidepressant, check with your doc for the one clean on 2D6. Remember, off of Prozac you will always have a better, less complicated, less modified set of symptoms to evaluate.
Please do keep us posted – it will be interesting to see how she is over the Holidays-
cp
Glad to find this blog. My daughter is 6yrs old, weighs 39 lbs. We have had behavior issues since she was about 3 yrs old. Teachers used the usual “impulsive, immature, talks out of turn, talks excessively, disrupts class, always trying to be funny…” I could paper the walls with the notes. Academically – she is well above average. The pediatrician really did not want to address these problems b/c of her low weight and her academics are not suffering. So, we decided to a psychiatrist for help. In the meantime, we had an IQ test done to see what we were dealing with. She scored in the top 2% for her age group in all areas except the Working Memory Index (where she received a very low 25%!!). The diagnostician said we have a gifted child, 130 IQ, but with definite Attention weaknesses. Psychiatrist said it is the “hyper” kind and prescribed Intunive as our first attempt at help. 1 mg for one month to start. Week one (sleep constantly). Week two we saw some improvement in impulse control and excessive talking. Weeks three and four – back to where we were before (teachers claimed to see no improvement with self control). So, three days ago we went to the 2mg stage. She is even more tired. Fell asleep in a class twice today. I checked her pulse and it was 62 beats per minute last night and again tonight. She is pale and looks so tired. I feel like I am harming her. I called our doc and she is offering a switch to Strattera, and said 62 bpm is low. I don’t know how I feel about Strattera. I think it will be more of the same. How long should we wait to see if the extreme tiredness goes away? I want to stop immediately (mama bear). My husband thinks we should wait the full 7 days to be sure. At this rate she will sleep through Christmas.
I just want to help her get more self control but not knock her out in the process. Would appreciate any advice.
Worried.
Brandy,
Best to report these findings to your doc and pass the ball to her. It does appear that you are moving reasonably and correctly, as from the first titration she took a considerable time to reach the expected plateau. She could be simply slow to metabolize for a variety of reasons, – suggestions regarding the changes in burn rate covered in some of these other questions. – Agree with the fact that ‘knocking her out’ seems quite counterproductive. As for me, I’m on the conservative side, and always err on the side of too little.
Will be interested in your keeping us posted please.
cp
Not-Dr-Parker here, Brandy, but I just have to ask why the doc has not mentioned a stimulant. They are the first-line treatment for ADHD, and your child doesn’t seem to have any contraindicative issues. If it were my child, I would surely consider a stimulant before Strattera.
As for the tiredness, I’ve often seen adults with ADHD who are tired and sleep a lot after starting treatment. For many of them, they are “paying off a sleep debt” after years of getting insufficient sleep. After a while, they normalize. So, if your child has never gotten good sleep, perhaps that is the reason. Or perhaps it’s that Intuniv is not the right medication for her.
I encourage you to keep reading through Dr. Parker’s site (and listen to the radiocasts, etc.). And especially look at some of the dietary issues he writes about. If she’s a cereal-and-milk kid in the morning, for example, you might want to re-think that.
Gina and Brandy,
Thanks for weighing in on this one, completely agree with your entire perspective. So often the stimulants are overlooked, just simply trying to stay away from them, – when they are first line treatment for ADHD. I completely agree with the suggestion of stimulant before Strattera as well, and only use Strattera as an absolute last choice.
The common other denominator: metabolic issues with the diet will significantly interfere with success on any level… then you have to do the food sensitivities test.
As Gina so correctly observes: if it proves to be the wrong medicine change it. If she has metabolic issues [appetite, picky eater, bowel] be prepared, very likely nothing will work as expected.
cp
I have an 8 yr old son with ADD/ADHD. I also have ADD and so does my husband. We both take med for it so we know it helps. I am an artist and my husband is a philosopher. Needless to say we are a creative family. My son is very creative but he started having problems concentrating in school. He would over think what he was trying to learn. Asking so many questions and getting frustrated with the basic answers. It became a problem in school. He was very analytical when learning to read he focused on the “reading rules” but when there was an exception he became frustrated. Reading and writing has become a challenge. According to his teachers and head of school, his comprehension and understanding of subject matter is extremely high for his age. In spite of his reading ability. He is in the 2nd grade and reads on a 2nd grade level but at his school most 2nd graders read on average 2 grade levels ahead.
We were advised to try Focalin 5mg to help. He has made a lot of improvement. However it makes him anxious, loss of creativity, and he has lost weight. He has celiac disease and the weight loss is a problem. we have been on a gluten free diet for 6 yrs.
He has bilateral amblyopia ,diagnosed at 3 with +1100/20. now his vision is +650/20. He seams to be experiencing vision disturbances and twitches in eye. We had his eyes checked and all is going well.
He is a happy child never had any anger issues, has a lot of friends and gets along well with peers. He makes friends easily. According to his last school report he has a strong ability to defuse conflict and suggest a solution. He has respect for adults. We just have a problem with daydreaming following directions, talking asking questions, hyper focusing on a rule or subject, doing tasks in a timely manner– he gets distracted. Both at home and school. It does cause a problem, especially when we need to do something quickly.
Would Intuive be good for us rather than Focalin?
j,
Sorry – Answered this question over at the Intuniv Dosing post here.
cp
I am wondering about the effectiveness of Intuniv in adults and have not been able to find any information on it. Are the side effects the same in adults as children? It has been recommended for me to use but I have had the most positive changes on Adderall XR. I realize that as I age the Adderall is harder on my body but being able to function at work and get along day to day is also important. My impulsiveness is decreased, my attention span is longer and I am able to somewhat control my hyperfocus to my benefit. I do seem to metabolize it quickly with a slump after about 6 hours so I do take it twice daily. I am concerned about changing medications when this seems to work the best so far and I am also concerned about the side effects. Also, can Intuniv be taken as an adjuct to the Adderall XR so that I might be able to decrease my dosage to once daily? Is there any benefit to using both the Intuniv and stimulants together?
Thank you so much for your time.
CJ
Chirstel,
Adult indications are under review right now, so no specific recommendations have arrived from the company about use with adults. My sense of matters: Tenex, though significantly different, has been approved for adults for years, so there should be no problem. I suspect the very same pattern of low and slow starting for adults will become the standard as it was when going from the child studies with Vyvanse to adult indications.
Best bet, just remain aware of the dosage, the drug interactions and indications as documented in these other posts. – And, yes, preliminary, recent studies show that it can be used effectively with Adderall and MPH compounds. There are some indications that they can work well together. I think that one will be determined in the office by the doc and the patient reviewing.
cp
Dr. Parker,
I have just stumbled across you and this site in my research into Intuniv. My son just recently turned 8 and was diagnosed with ADHD this past spring. As I continually read about ADHD kids Luke seems wise beyond his years, is very bright when it comes to building things or math and picks things up quickly when he is receiving instruction one on one or in a very small group, but he struggles in school generally. Long story short, we started with a central auditory processing disorder diagnosis when he was six as his primary issue seemed to be language both receptive and expressive. An exam with an audiologist confirmed a fairly significant CAPD at the time. As he progressed in school it was obvious that ADHD was also a large part of his problems as impulsivity, restlessness, inability to attend, and defiance increased as he got older. We saw a neurologist who, after an EEG, perscribed Focalin XR. This worked like MAGIC, at first. We started with 5mg and after about a month moved up to 10mg. He was able to focus, concentrate and made great strides in school. His language issues even seemed to improve. Now it seems the Focalin is either failing him or is the wrong drug. His ability to focus has tanked, he has become very impulsive (throwing things, slamming things on his desk) and is increasingly defiant (refuses to do work, follow directions). While other times he seems spaced out and at home sometimes too compliant and sometimes melencholy for no reason. With age it seems his receptive language abilities are about right at developmental level, but his expressive abilities are still below, which of course is leading to some frustration on his part especially when he is supposed to expressing himself through writing. We were seen by the NP in the neurologist’s office today and she suggested Intuniv. From what I’m reading it sounds like it may work for Luke but she has suggested we stay on the Focalin while we start the Intuniv? Does that make sense to you? (She mentioned d/c’ing the Focalin eventually)
Second in one of the posts above you mentioned something about “immune dysfunction, bowel challenges and is-he-a-picky-eater”. While Luke is rarely sick, I don’t think he has a solid BM in his life (not watery, but always very, very soft) and he would live on Mac and cheese, peanut butter and jelly and chips if I’d let him. He NEVER willingly tries anything new and is indeed very picky about what he eats. As all of this is very new to me can you shed some light on what this may have to do with anything and what to do about it – or point me to the best place to read about it? We have tried adjusting his diet, etc. in the past but because he is so picky it is very difficult to do.
One additional thing that the NP this a.m. more or less ignored – prior to starting meds Luke would wake up in the middle of the night crying and saying his head hurt. He’d be up 30 min. or more, would eventually throw up and then go back to sleep. In the morning you’d never know anything happened. This would happen about once a month from the time he was about 6. I only recall it happening once during the day at school. Once we started Focalin those incidents ceased completely. We had our first return of that 2 nights ago. Any idea what that’s all about? Initially the neurologist said it was “interesting” but had little else to say about it.
Thanks so much,
Cathy
Cathy,
Interesting how just a bit of info can take you down different paths – and without a compass it can be disconcerting out there in the woods.
No problem taking the Focalin as suggested with the Intuniv – take a few weeks to reach the correct dose with Intuniv as spelled out in this more recent Intuniv post.
The most telling challenges are in the last two paragraphs of your note: Picky eater, immune dysfunction, bowel issues, and diet are all the bellwether for challenging times if not completely identified and corrected. I would wager he is low on the excitatory neurotransmitters, and that even the excellent Intuniv, while it may work for awhile, will likely meet the same fate as the Focalin – quits working.
He is a very good candidate for neurotransmitter testing and the last items you mentioned with sleep and migraine are quite likely related. Best bet: measure the biomarkers, and move forward with specific interventions as soon as reasonable.
cp
Dr. Parker,
It is such a relief to find some information from other parents and doctors who are trying Intuniv as it is such a new medication. My daughter has been taking it for about 6 weeks now. We went very slow on dosing just as you have recommended, and it is working wonders. I will say that she has become more irritable and extremely sleepy. I believe that as she adjusts to the dosage that the irritability goes away. However, we have just increased her dosage to 3mg, so she is still adjusting to the extreme sleepiness.
The doctor we are seeing put her on Prozac for anxiety, but have I read correctly that you would not recommend Prozac with Intuniv? She has been experiencing very strange sleeping patterns. She is either staying awake many hours, going to sleep right away and then waking hours early, or so sleepy she falls asleep around 6PM and sleeps through the night. Considering her sleepiness, the doctor recommended giving her the Intuniv at night and the Prozac in the morning, but this has not been helping. Should we be giving her the Intuniv in the morning despite her sleepiness? Also, would you recommend something other than Prozac for her anxiety.
THANK YOU so much for your truly caring concern for parents and children working through ADHD. Every Doctor should give such personal and attentive care to their patients. Thanks for sharing your plethora of knowledge!
Sandy
Sandy,
Thanks for your kind remarks, and, yes, you read it right: Prozac and Paxil [and Luvox] should not be given with Intuniv. Intuniv is a 3A4 substrate, but not listed on this link [is listed as such in the PI [package insert]. You will see on this first linked list that they left out guanfacine as a 3A4 substrate, but they did cover the bases with the rest of the inhibitors. Also, on the induction side, have to watch Tegretol or Trileptal, as they can both induce Intuniv [cause it to run through to fast requiring higher doses [see the first link], and for those treating bipolar disorder with Intuniv watch for Depakote as a inhibitor as well.
Your girl is very likely accumulating Intuniv, and is coming out the ‘Top of the Therapeutic Window‘ – with the result that your doc is doing what he/she knows best, changing the dosage time of day to accommodate to the obvious side effect. Great idea if the interaction weren’t the key problem.
In this case I strong recommend you download and print the interaction link for your doc, and get off that Prozac. What I find so disconcerting in this interaction scenario: Intuniv gets blamed for this weird reaction, and Prozac [and others noted] are the culprits. I have repeatedly seen this kind of problem with AMP products such as Vyvanse and Adderall for years, as many continue along in denial that the CYP 450 system doesn’t require attention – and the fact that dirty drugs can create significant problems with otherwise clean medications that work very well if used correctly. The good meds get blamed as they are new, and the old dirty ones get off, based simply on familiarity! Sounds like a popularity contest, not science.
Drugs that are clean on both 2D6 and 3A4 are Effexor, Pristiq, Lexapro, Celexa, and Lexapro has recently found an FDA approval down to 12 yo. Irritability and sleepiness should go away – but, without knowing more, I would try her just on Intuniv alone before running another med in there, it might work well as a stand alone.
Hope this helps,
cp
Dr. Parker,
I can not thank you enough for your advice. You confirmed what I felt as a parent may be true. No one knows their child like their own parents, but we can’t just rely on our gut feelings when it comes to the complex issues that some medicines can create. I really loved how the Intuniv was working until the Prozac was given. I will definitely take your advice and speak with my doctor about getting her off the Prozac and staying with the Intuniv on it’s own. You have been the source of comfort I have found in this process. I have searched far and wide for advice about this new drug called Intuniv. My hope is that many more people will run across the information you have provided as so much of the time, as you’ve said, the good meds can get blamed for the dirty works of others. To anyone reading, so far Intuniv has been a definitive YES for my child! Dr. Parker, again, your advice has been worth more than I can say… Thank You, Thank You, Thank You!!!
Oh, One last question, would you recommend weaning her off the Prozac (fluoxetine) slowly? She has been taking a 20 mg capsule daily for about a week now.
Sandy
Sandy,
Thanks so much, glad we are on the same page. – Will be sending out another post on Intuniv drug interactions soon using your comments – your questions have been most helpful.
No wean necessary on Prozac, just drop the stuff asap – and get in for the next antidepressant, clean on 2D6.
cp
Dr. Parker,
Tears of joy in my eyes- YOU’RE AWSOME!
Sandy
Hello Dr. Parker –
Regarding the NT test, which I just mailed back today, are childrens’ tests typically done with a urine sample, and how does medication presently being taken get figured into the results, particularly if one is still in the process of trying to find the right DOE and correct combination of meds for treating comorbid ADHD, ODD and general anxiety? I was just wondering how accurate the tests are for determining possible cause (of disorder) and potential effectiveness of a current treatment. Forgive me for sounding a bit ignorant with regard to the medical testing processes, but I’m trying to improve my understanding of the science. I have a “mother-lion” fear of getting caught in a loop of one pill, then another, to treat the side effects of the previous… ad infinitum. Regardless of my fears, I completely support pharmacology especially when I am able to ask and learn – knowledge is power. That said, I think I speak for most parents, especially those of us with a more complex ADHD diagnosis, when I say it is scary to give a young child medication.
Quick update: Jack is on night 3 of 2mg of Intuniv and we’ve had some behavior regression “meltdowns”, which seems to be related to how tired and/or fatigued he is. The 10mg of Metadate he takes in the morning are not as effective now. While I’m waiting to get the NT results and consult with you, I’m trying to follow your advice and find the “window”, but I’m a bit confused. I’m going to talk to Jack’s regular doc tomorrow and I just want to be clear in my understanding of the window. If I’ve done my homework, we would increase the Metadate CD to 20mg and hang in for the week on the Intuniv and then go back to 1mg if no improvement is seen. Finally, we give Celexa for Jack’s anxiety – 20 mgs every night. He has done well on the celexa, but if/when the Intuniv begins to really take effect, at what point do you typically cut back the dose on the other drugs, or do you? I’ve read of Intuniv’s success as a monotherapy on your site, but that sounds almost too good to be true? If you could connect the dots, I would be most grateful.
As for me, after a very long day of trying to keep too many plates in the air, I’m ready for a nice glass of wine and some good fiction!
Kindly,
Kate
Kate,
Running to a meeting in Atlanta today – short note: I don’t know if we will be talking but hope to as all the subtle nuances of these questions will take the full hour of conversation.
Several issues: Sounds like he is taking the Intuniv in the PM as well as the Celexa – both are usually in the AM and sounds like the Metadate is not dialed in correctly either. With that kind of background challenge it is almost impossible to make a declarative speculative pronouncement on the NT findings until I have a chance to review every detail.
Sorry can’t be more helpful, look forward to hearing what your doc says.
cp
My 12 year old is on Concerta 63 mg and has been on Concerta for about 28 months (with a gradually increasing dosage as she has grown a lot), with a month off this summer to trial Vyvanse (awful experience of zombi-girl and depression.) We are not totally happy with the Concerta, namely because of the AWFUL morning and evening experiences we have—she can be really aggressive and it is a real problem when she has sleepovers at a friend’s or activities (band, parties, etc) later in the evenings and she’s left “high and dry” as the drug is no longer working. She does well at school however, and is on the honor roll, but evening homework time is HORRIBLE.
She was given a SPECT scan in August of 2009 from one of Dr Amen’s associates and the scans were read out of Dr Amen’s clinic. She was found to have “ring of fire” adhd. We started on Lamictal with limited success (stopped some obsessive behaviors) but has done little to nothing for the explosive nature of her personality, even at 150 mg.
Anxiety is also a component and just this week I had an appt with our psychiatrist and a small (10 mg target dose) of Celexa was added. Needless to say, the growing list of prescription meds is a concern to me.
I’ve been following the whole Intuniv development process for the last several months online and just stumbled on this blog and one other where girls with ring of fire adhd are mentioned specifically. Both seem to be having phenomenal results with Intuniv or guanfacine. I called my daughter’s psychiatrist just this morning about trialing Intuniv over the winter holidays. I just got a call back, and he is sending us a starter pack!
Do you think it is even remotely possible, if she has a positive response to the Intuniv, to “eventually” get her off of the Celexa, first and possibly even the Lamictal? Is the Intuniv THAT good at taking care of the issues, in your opinion/experience? Clearly I will do what works best, but do I have any reason to hope??
Thank you for your time.
Cally in Texas
Cally,
Thanks for your note, busy PM, but will get off a quick reply:
Having worked with Amen for many years [4] in his DC office I can attest to the significant contribution Amen has made with SPECT and the addition of metabolic brain evidence [SPECT = Regional Cerebral Blood Flow] for complicated presentations. What SPECT does not show, and Amen completely agrees with this point, is what is causing the underlying ‘Ring of Fire’ [a regrettably evocative and non-scientific term with very little in it that endears Amen to the neuroimaging community].
The result of that unhappy circumstance is that one can see suggested other interventions, but the clinical intervention process is still completely hung upon the evaluator/psychiatrist in the office with you at that moment. I have often seen ‘Ring of Fire’ associated with significant moods, and agree that the findings do imply major mood dysregulation, but the fundamental question nevertheless persists: What is causing that specific SPECT finding – and even more importantly, what are the many causes of that diffuse cortical hyperperfusion? Bipolar is not a cause, it is a result, an appearance from the outside looking in. DSM-4 does not correlate with SPECT, DSM-4 is static and descriptive, SPECT is functional and explicitly introduces the variables of measurable time and specific context.
Intuniv does hold interesting promise, but, quite frankly, it is too early in that game to stand and shout the positive possibilities from the rooftops – since we simply have not traveled enough miles down the road together. Having said that, it does look very promising, and having done multiple presentations with many physicians over the past months I can report that the response from many has been surprisingly good. The research does look very good.
Finally, there is much reason to hope. I would expect that your daughter might even be better with the Celexa. More evidence is available, documented in other comments here, so rest reassured there are answers out there for your girl. SPECT is but one emerging view of the functional brain.
Best wishes, please stay in contact and let us know how matters turn out.
cp
Dr. P — I’ve been meaning to ask you. Is the Neuroscience testing applicable to children and teens? I’ve heard that the baseline group was composed of 20-30-year olds.
It would be great if parents had a tool to help target a child’s needs without so much trial and error.
Here is a linkL http://www.corepsychblog.com/244/
Folks, my husband and I did the testing recently, and I was highly impressed. My local physician, who is extremely knowledgeable, likes that test, too.
Moreover, we did it from home (you just spit in tubes and mail it in…..Dr. Parker forwards the results to you in a PDF and you discuss by phone). I’d always been intrigued by supplementing with amino acids but until this test, it seemed like too much a hit-or-miss process. They’re working tremendously well for my husband, if less so for me. Then again, I think I just need some rest! 🙂
Gina
Gina,
Yes, the testing is quite useful in complex issues for children and adolescents, as that age range often has even more difficulty identifying chronic underlying issues even as obvious as fatigue.
I recently worked up and ASD child, more on the Asperger’s side, and soon after starting he improved eye contact, became more settled and suddenly asked his father to go fishing! A landmark first for this disconnected child.
Looking forward to seeing what your progress and problems are… exhaustion can definitely take longer to come around!
Thanks for your kind remarks, and very pleased to hear that his nibs is moving along! Talk soon!
cp
Thank you so much for your kind words and cautious encouragement. I am really hoping this helps. I pulled out some 3 year old NeuroScience test results and noted that her glutamate, GABA and PEA were all elevated, serotonin was low, etc. Poor kid. We’d tried the products recommended at the time, without success. My girl is a tough nut. We have had her on a good multi vite and oils since age 3, so that is a constant.
I’m looking forward to the elaborations on the use of Intuniv along with the Concerta. I want to know all of the options for discussion as needed with our doctor.
Thanks again for your help.
Cally
Cally,
In second opinions with NS I frequently see that many limit their corrective experience to only what the initial NS findings suggest from the lab. They often don’t know precisely how to measure and evaluate the response to the interventions, just as many are missing the mark completely with basic stimulant meds. With NS the clinical results often take more time, are more subtle, and without an awareness of the subtlety of the change and an appreciation of what to do next, the medical team prematurely calls it a day.
Interestingly, another oversight: the frequently missed points regarding potential other interactions with immune & hormone dysregulations. I just saw a ‘hopeless case’ today referred from TX after ‘counterproductive’ SPECT imaging. SPECT showed a hypometabolic brain with abundant diffuse hypoperfusion, and, as is often the case, he was left with the brain injury diagnosis, after absolutely no history of brain injury. You don’t have to have ‘brain injury’ to have punched out images with cerebral cortical scalloping and large cold areas.
The patient suffers from an abundance of chronic metabolic issues, with almost every NT completely in the tank. After about 1 mo of working with neurotransmitter precursors the stimulant and antidepressant are starting to kick in, and he can actually move around his home. He is completely disabled with significant adrenal fatigue, and without specific attention to his adrenals we would simply be shooting well intended blanks.
I just added Balance D, as his DOPAC [the primary breakdown product from dopamine] was completely in the tank, showing he had simply no DA reserve. He is remarkably better even without this specific next intervention. – These days we often see these results, and this type of dramatic change simply cannot be classified as not anecdotal.
Made my day, hope it helps yours,
cp
Hi folks,
Dr. Parker is the rare physician who not only deeply understands these complex issues but also is incredibly generous in sharing this understanding.
I encourage you to sign up for his free e-book (“Predictable Solutions For The 10 Most Common Challenges With ADHD Medications”). You’ll find many explanations and strategies you won’t find elsewhere and that are critical for helping yourself or your family member “get the meds right.” It seems that many people (and their physicians) keep trying new medications before properly dosing (and perhaps combining) the medication that might prove best.
Here’s the link: http://www.corepsychblog.com/adhdbook/
Gina Pera, author
Is It You, Me, or Adult A.D.D.?
Thanks so much Gina!
I do hope folks do go over and check that white paper out. It has a considerable number of details in there for 20 pgs – I’m adding so much more to the book. I have to stop this writing and just get this edition out!
And whilst you are at it friends, do take a look at Gina’s book: Is it You, BE, or Adult ADD? it has won many [was it 4, or 6?] book awards, – simply because Gina is so completely authentic and candid, and so irresistibly fresh in her approach to the complexity of problems in relationships challenged by one or two with ADHD.
And PS, Gina will be speaking at the ADD Resources conference in Seattle 11-14, this next weekend. Wish i could be there!
cp
Thanks, Dr. P. Actually, the ADD Resources conference was in November, and I thoroughly enjoyed myself. Beautiful city and wonderfully responsive and attentive audiences!
Hey G,
That’s what I get for posting so early in the AM! 😉
cp
Dr. Parker,
I am ecstatic about the wealth of information on your web site, as we are considering a move to Intuniv for our 10-year old son. He was diagnosed with ADHD when he was 5 (almost 6), with his greatest challenges being impulsivity & attentiveness with hyperactivity as well. By age 6, he was experiencing motor & vocal tics that had persisted since age 3. His tics appeared daily although not constantly, but were increasing in variety and frequency. At age 6, he started 36 mg of Concerta. The positive affect on his attentiveness and impulsivity was dramatic. However, his tics became alarming. Our neuropsychologist added Tenex to the mix (.5 mg in the a.m. and .5 mg in p.m.) With the addition of Tenex, he has virtually no tics… Only the occasional “hic” here or there. Tenex has been amazing for this purpose, and that is why I am familiar with it.
Now, at age 10, my son has taken 45 mg of Concerta for almost 2 years, but we see a decrease in his attention and impulsivity this school year. We considered an increase to 54 mg, but he has a fairly high anxiety level and also suffers from sleeplessness, which (of course) worries him greatly. In speaking with his school team, we discussed the possibility that a non-stimulant ADHD med may alleviate both his anxiety and his sleeplessness. Not surprisingly, our doctor does not have experience with or a great deal of knowledge about Intuniv. However, we hypothesized that if guanfacine “works” for him, perhaps his behavior ALREADY should be “improved” during those first a.m. hours after he takes .5 mg of Tenex. I don’t know if this hypothesis is at all valid. However, I am not sure we see marked improvement in the earlier a.m. versus early afternoon. He clearly becomes less capable by evening, and we occasionally (no more than once a week) give him a 5 mg booster of Focalin at 3:30 when he has evening activities and lessons that require his attention until 8:00 p.m.
My question is… For a 10-year old child (about 62 lbs) who has already been taking .5 mg of Tenex in a.m. and .5 in the p.m., would we see a big difference with Intuniv? I can’t imagine that a 1 mg dose of Intuniv would do something that we’re not already seeing, but who knows? Do kids his age ever take a 3 or 4 mg dose of Intuniv? I would love for him to give a non-stimulant med a try. But, I am struggling with the idea that he already takes 1 mg of Tenex during the course of the day PLUS Concerta… Might Intuniv be a good alternative? Or, would a look at something like Strattera be better.
Kimberly,
First of all, thanks for your very kind remarks – no matter how you slice it these new meds, and the new science, offer so much hope for the challenges many face. – And the neurophysiology, the deep solutions, while somewhat new and complicated at first, really can be translated for everyday street application. Thanks, it’s a real privilege to find myself in a position to actually have this great info, and for that I thank the pharmaceutical companies, specifically in this case, Shire, who take the time, and invest the actual dollars to educate docs like myself to improve our help for our patients.
Your boy is an excellent candidate for Intuniv, no doubt. Several key points for your doc, which, if he sees reps, which every doc should do, he will get this next set of info – if he doesn’t these are cautionary notes do prevent surprises. Shire’s research teams have already asked many of these questions:
1. Intuniv is different than Tenex in that the release makes it a very different drug, with a clinical half life of 24 hr. The evenings and even the next morning are covered for many folks.
2. Peer reviewed evidence in specific studies show that attention significantly improves, and it is not only for opposition or irritation, even tho it works well for both ADHD symptom pictures.
3. Important point: Start with 1mg Intuniv the first week and stay with the recommended dosage strategy. No need to rush, and don’t be disappointed with no big change the first week. Only about 20% did well with 1mg/day in the AM. [For others: always start back at 1 mg/day even if your child is already at 2-3mg/day.]
4. Most kids in the studies with [from 6-17 yo] children and adolescents did best in the 3 and 4 mg dosage range. But the dosage is often dialed in best by watching the weight and using it somewhat as a guide [kids with more weight needed the higher doses – all spelled out for you and your doc specifically in the sample pack]. Unlike stimulant medications the metabolic rate and weight are related with Intuniv, and not so idiosyncratic as with stimulant meds.
5. Shire has just released as study reviewing Intuniv with AMP and MPH products and they show no untoward effects used together. Your doc can ask his Shire rep for that study, I hope to add it in a post here at CorePsych Blog soon, depending on pharma guidelines.
6. Intuniv may prove to be sufficient as a stand alone… only time will tell. I would not even consider Strattera – it has been largely a waste of time and money in my office – but it does work as a last result for about 5% of patients. When I am down to that ‘maybe Strattera’ level I would insist on neurotransmitter testing rather than continue to shoot blanks.
Good luck, does sound promising, and feel free to print this out for your doc if it might be helpful to your medical team,
cp
Dr. Parker,
Thank you for the fast & detailed reply. I am intrigued by the study you mention regarding use of MPH products (like Concerta) together with Intuniv. This raises a host of questions, like, can the dosage of Concerta then be reduced over time? Is it worth it to try Intuniv alone, reach some type of (hopeful) improvement and then consider adding Concerta back into the mix? We live in Wilmette, IL (northern suburbs of Chicago). Our last neuropsychologist moved out of the area, and for the last couple of years we have simply been redosing and consulting with our general pediatrician. I am feeling like it’s time we should have a re-eval with a pediatric neuropsych or psychiatrist — hopefully someone with some research knowledge about guanfacine/Intuniv. Do you have any recommendations? (Evanston, Northbrook, Skokie, Glenview, Northfield, etc.)?
Best regards,
Kimberly
Sorry Kimberly,
Don’t know anyone up there yet – will soon be training interested professionals and providing those names on the website.
cp
Hello,
Jack just completed the 1st week of Intuniv 1mg and we move up to 2mg tonight. The only side effect thus far, is tiredness and slightly puffy eyes. No real change in temperament, but I’m thinking “no news is good news” at least for Jack, since he has had challenges with medication. I know it can take 6-8 weeks to determine effectiveness, but I was wondering if the fact that he had taken Clonidine for 10 days would change things?
The good news – he seems to be doing well on the Metadate CD and it does make a difference in his ability to focus and stay on task. However, since he is homeschooling until Jan, I can’t really tell how he’ll do in an actual school setting as this is where his oppositional behavior tends to escalate. Good thing we have a little time before he starts his new school, a Montessori Elementary School with about a 1:10 student/teacher ratio. It is small and “home like” which Jack prefers, so we’re keeping our fingers crossed that the Intuniv helps with his coping skills. I must say, however, that working at home with Jack has been great. (Never thought I would feel that way). Since I run my business from my home office, I can have him in my office during the day. He is sailing through the work, the same work he was struggling with in a traditional school setting (private parochial). In fact, he completes his work so quickly that he has lots of time to pursue his interests in drawing, legos and engaging his imagination – all healthy practices for his active mind.
The truth be known, I’ll miss him when he returns to school. I’ve seen a whole new side of Jack by having him home while the other children in the neighborhood are at school. There are no competing distractions so the entire energy level is different. I’ve learned much about my son as a result. Regardless of what happens with Jack’s schooling, I’m fortunate to be in a position to choose what works best for Jack and our family. It has been so nice to have a break from teachers and school directors calling me during the day about Jack. Often with a caring, but irritated tone in their voice. If they only knew what we’ve tried so far! To others facing similar challenges, if homeschooling (temporarily) can prevent the total shattering of a child’s self image, then I would find a way to make it happen. There are numerous resources online and in most communities, for families like ours, who occasionally need to take a step back from the “system” and remind ourselves that it’s okay to take a different road and it’s okay to blaze new trails. With the right attitude and the correct medical help, kids with ADHD can grow in acceptance of who they are instead of wishing or trying to be like someone else.
I’m so happy to have found this site. Since I started this journey with Jack, my instincts about what is accurate (regarding ADHD information) and what is intended to scare and or shame, have become highly attuned. I would recommend this site to anyone in need of helpful information and real support dealing with complex neurological disorders that are treatable, but as many of us know, can be tricky. Dr. Parker, you are a generous guide indeed.
There’s a line in the movie, “Remains of the Day” where a young student asks Mr. Stephens (Anthony Hopkins), “Why do people read?” and Stephens replies (I’m paraphrasing), “So they don’t have to feel so alone.” That’s why sites like this matter.
Thanks,
Kate
Kate,
Thanks as well for your very kind remarks, it sounds like you and your medical team are moving smartly along. I share your deep appreciation for all those before me who have taken the time to write down the details of what-works-best.
1. I completely agree with your conservative, relaxed, watch-and-wait attitude – as do the many physician researchers who have reviewed Intuniv with hundreds of children. Their message: Don’t hurry, watch for the specific response, remain informed about side effects, and sail by those markers – and stay in that Therapeutic Window! 😉
2. You will likely see results sooner than that: More likely they will occur in week 2, 3, or 4. Watch the top of the window as in the post, but don’t fret if he becomes a bit soporific, as with continued use that side effect can diminish over time. If too soporific, fatigued, or just plain tired, and having trouble coping, simply discuss dropping the dose back 1 mg with your medical team.
3. On a reassuring note: You, as would any parent, might very find some relief with these next interventions, and won’t have to worry so much about the guy at school and with peers. It’s just great with parents like yourself who can make the extra time and support their kids as you have – when he is 23 he will be thanking you.
4. You are talking to the right guy when you are talking about ‘the system.’ Systems may work for many, but don’t work for everybody, in school, or in medicine – the real deal is a caring, highly individualized, ‘custom job’ either with parenting or with medical intervention. It can be lonely without great opportunities for dialog such as this – and I am looking forward to providing some means of regular teleseminar meetings and a forum through CorePsych to further enlarge our community communications.
Thanks for keeping us posted, Kate. This next week will likely see some hint of improvement.
cp
Is intuniv at all similar to strattera or ssri’s? Intuniv sounds great for my daughter, but Strattera and zoloft both cause a lot of suicidal ideation. I know that they affect seratonin and norepinephrine, does intuniv do something similar? I really don’t want her to experience those thoughts again.
Angi,
Excellent question – and that, as they say, is exactly the point. Not at all like Strattera [see the revised comments at the end of this Intuniv post, & not an SSRI. Method of action is completely different in that it does not modify serotonin, dopamine, or norepinephrine, the big three. Rather, it facilitates/improves the activity of the glutamate networks through the alpha2a post synaptic receptor. Different action entirely – different than any other ADHD medication.
Having said that, Intuniv isn’t for everyone. If your daughter has a reaction to Intuniv she likely is already over the top of the window on glutamate, and her ADHD is caused by imbalance either with that glutamate abundance, or a deficiency of another neurotransmitter, such as PEA. See the NeuroScience page here at CorePsych Blog for more details.
Please keep us posted on her response to Intuniv if you and your medical team try it.
cp
Hello Dr. Parker,
Gina Pera sent me the link to this e-conversation and I’d like to chime in. My 12 yr old daughter was diagnosed with ADHD 4 years ago at the Amen Clinic. She was identified as the “Ring of Fire” subtype, with oppositionality, inattentiveness, and restlessness. She was prescribed Tenex (guanfacine) and Omega 3 oil supplements.
The results are nothing short of amazing. She only takes 1 mg of the guanfacine each morning and evening and she is no longer oppositional, there is little fight picking behavior, and she went from needing a reading tutor to performing above standard at school. As the Amen Clinic only served as the referring clinic for the diagnosis, I have met and spoken with over 10 different doctors in general pediatric practice and NONE were aware that Tenex is a medication to treat her type of ADHD. In fact, the Amen Clinic said that on stimulants, her aggressive, defiant behaviors would be magnified, not helped. Please continue to inform your colleagues and patients about the benefits of Tenex. For our family, it has been fantastic.
Sincerely, Mary in Seattle
Mary,
Thanks for the input, look forward to commenting more this PM. As a quick comment: I have seen SPECT brain imaging evidence frequently provide new, useful information, and glad to hear it worked for you. Love the Amen Clinic team up there in Tacoma, had a great time with them on a visit in about 2003 during a speaking tour up there.
See ya later,
cp
Mary,
Isn’t Intuniv the same as Tenex…both guanfacine? Just that Intuniv is slow release? I am very new to the world of Meds, but that’s what I’ve gathered. I have looked at Amen’s subtypes and the most accurate for my son would be Ring of Fire as well.
Thanks,
Denise
Got so immersed in the comments, forgot to re-read the article above. I just answered my own question, or Dr.Parker did 😉
Denise,
Glad you looked it over and found the answer… it is the same drug, but studies and my clinical experience thus far is that it is an improvement, and a different medication in effectiveness. Post coming soon. I have recorded several short Intuniv Cinchcasts over here, – the last one on dosing is pretty straightforward with specific info.
cp
Dear Dr.Parker,
I stumbled on to your website while researching Intuniv. My son just started Intuniv (1mg the first week, and 2mg since) We are on 2 weeks and 4 days now. Because of his weight, the Dr. would like to keep him on 2mg. I don’t see any marked differnce other than he is tired, eyes a little puffy, and grouchier than usual, I think because he is so tired) He sounds very much like Kate’s son. He had been in a private school 1st through 3rd, but was expelled in 3rd grade due to his ADHD. He is extremely bright as well. But what you wrote Dr. Parker “…the oppositional, irritated, frustrated child with ADHD…” also describes my son. This is his first med, we’ve tried 6 months of neurofeedback, the bio-medical approach, a naturopath, and he’s been gluten free for 3 years, no processed foods or dyes, all in an effort to avoid meds, but all to no avail. Intuniv seemed like the best med for me, his Mom, due to it’s gentleness, lack of major side affects, and that it wasn’t a stimulant. I was hoping to see better results by now with the Intuniv because all the lit says that you should see results within 2 weeks. I did have his neurotransmitters checked when we were trying the bio-medical approach. If I remember correctly, his seratonin was low and his glutamate was high. Dr. Parker you mentioned some times neurotransmitters can affect how the Intuniv works. Would appreciate your comments as well, and thank you for your web site.
Denise
Correction: Diagnosis was ADHD/hyeractive inattentive
Denise,
Stay tuned, I will write a comprehensive reply tomorrow, including answers to all of your questions and much more. Intuniv does require some different thinking, and be prepared it will be a longer than usual post. – And I will clarify what I have seen with neurotransmitter biomarker measurements in my office in one case with an adverse event. The challenge, we are, as I pointed out here, beyond simple synaptic thinking, opening the big door of ‘brain networks’ and glutamate neurotransmitter activity.
And BTW, makes no difference about the superficial ‘appearance’ diagnosis: The pharmacology is often the same for D or HD… I regularly use the phrase ‘ADHD’ as the entire field is shortening that label to include both D and HD subsets. Many see little point in differentiating decreased executive function – either acting or thinking.
cp
Thank you Dr.Parker! I look forward to your reply. I hope that my sons neurotransmitter levels will not induce an adverse reponse!
Regards,
Denise
Hi Denise.
Obviously, I’m not Dr. Parker. 😉
Just curious, though…is there some specific reason you don’t want your son to try stimulants? Or have you heard too many scare stories?
Gina
I always felt like meds were just masking the problem, but not “fixing” anything physiologically. I just felt like meds were a band-aid. But I knew at some point, I needed to be open minded enough to meds if he was not improving or having “successes” in his life. After 2 years of actively pursuing a purely holistic approach, he wasn”t where he needed to be, and I felt like he was stalling. So we pursued meds. I did hear horror stories about stimulant meds, weight loss, inability to sleep, depression, etc…etc… I was very pleased when the Dr. we were referred to recommened a med like Intuniv.
Denise,
Thanks, missed my assumption a bit, but guessed that the long wait without meds did have a substantial, thoughtful consideration. So much of what we do with the ADHD label is predicated upon the limitations placed on the diagnostic categories which have evolved from those aforementioned appearances.
Your doc was right, Intuniv appears at this moment to be a very interesting non-stimulant alternative. More tomorrow,
See ya then,
cp
Gina and Cathy –
I made the assumption that Cathy had a problem with stimulants, as many do, because of the repeated bad press and misinformation about stimulant dosing and indications.
And on a deeper note, if we are thinking about using marijuana for ADHD, as indicated in the recent NYT article it does appear that a large misinformation/practice hole exists out there that must be precisely addressed [hint ;-)].
Look forward to enlarging the conversation tomorrow.
cp
haha! That’s hilarious! Sounds like he takes after you — master of the bon mot!
Yes, I would enjoy meeting you some day, Dr. P.!
g
Dr. Parker,
How effective do you find guanfacine monotheraphy for ADD, with your patients?
Thanks,
Josh
Josh,
Some of my colleagues swear by their experience with guanfacine monotherapy, especially for Oppositional Defiance comorbid with ADHD. I have been using it more, but still primarily as adjunctive therapy, as I have so much confidence in the other combos such as stimulants and antidepressants. I can tell you with considerable certainty, from my own experience, that I have seen some few turn almost completely around with monotherapy on failure of all else. Perhaps it’s my population – when they come to see a psych, it’s been down a long road of treatment challenges.
It does beg the question why didn’t I try it sooner. Simple answer, conservative philosophy, concern about side effects, which, upon systematic review, appear quite low – bringing it cautiously into the range of more regular augmentation and some first line therapy.
The ODD/anger ADHD subset appears to be the direction the research has initially taken – with considerable positive results.
Most especially you are asking about guanfacine immediate release – Intuniv is a whole different medication – and is clearly indicated for the attentional aspect as well.
Have had some remarkable turnarounds with Intuniv in the short time it has been out.
cp
Dr. Parker –
I have a 7 yr old son named Jack Henry who was diagnosed with ADHD, ODD and general anxiety at age 5. I recently was asked to remove him from a private school because of his impulsiveness and his refusal to finish his work. The final straw – he was told not to do something on recess and reacted by running away from school. After the teacher chased him down a busy street and asked him why he’d run away, he said he did not know why. He has taken Celexa for 1 year with good effects for the anxiety, but nothing for the ADHD or ODD. We then added Vyvanse which made him very sad and caused repeated vomiting even after careful titrating, so we took him off. Then we tried Strattera which made him extremely negative and did nothing for his moodiness and anger outbursts which, I should note, are always verbal and generally aimed at himself. He’ll scream at the top of his lungs that he should never have been born and that “nobody likes me” etc…. It seems to me that his perceptions of reality are always off and that he fails to connect his behavior with an outcome. It is either everyone else’s fault or he’s a “horrible person” because he accidently bumped into another kid. He has said to me many times that the mind he was born with is just “too much to deal with” and I believe him. He has great insight for such a young boy, but lacks self-control in spite of great efforts. In order to give you an idea of his thought process I’d like to share a quick story about a recent event. We were at the Dr’s office for a routine physical. He was sitting on the examining table and the Doc had it set in the highest position, which Jack did not like. He kept asking the Doc if he could get off the table. After about the 15th request, the Doc said “Jack, are you afraid of heights?” and Jack said, “No, it’s gravity I have a problem with.” He seems to have knowledge beyond his age, and yet it has been a struggle to teach him to read because the process of learning is terribly boring to him.
Previous to taking the Celexa, he briefly took Metadate cd but his anxiety was off the charts so that’s when we decided to just go with the SSRI. Of course this did nothing for the ADHD focus and impulse problems so that’s when we started trying different meds. Now we are back to taking 10mg of Metadate each morning and have added Clonidine .5 mg at night in the hope of evening out his moods. His Dr.offered to prescribe intuiv, but said it was the same thing as Clonidine with a slightly different delivery system. In addition to the medication, Jack works with a child behavioral therapist who is great with him. We will continue to see her on a weekly basis. It has been about 10 days since we started the the new meds and I have seen a little improvement, but he is quite tired from the clonidine which I’ve been told is normal can take 4-8 weeks to take full effect and get over the tiredness. The other option the Dr. offered was risperidal which may be the next step if this does not work. Jack is currently doing his school work at home until the end of the semester. He will start at a new school next semester which is a Montessori based private school. He is very bright and very creative and the Montessori system seems like a better fit for his personality (I hope). My husband is very much against putting him in our public school system with a special ed “label” because he is so bright. I’m not sure where he fits, but I do know that if we could find the right medications, he will eventually discover what a truly wonderful mind his is. I would love and appreciate your comments. Sincerely, Kate
Kate,
Increasingly we are seeing delightful, smart kids like Jack who come up completely refractory to both families of stimulant meds, and it is a heartbreaker… but the good news is – there are more paths to trod.
On a macro level, I do disagree with your doc. I fully admit that I had the same reaction as he did about Intuniv, but from my the research and some limited experience in my office, it really is a different drug. Yes, I speak for Shire, have been to all the Intuniv training, but that doesn’t make me unaccountable to you or my patients. The interesting thing about Intuniv is the mechanism of action and the half life.
The mechanism of action is the same as Tenex, not Clonidine, it hits the alpha 2a receptor not 2b and 2c, making it less hypotensive and less soporific, less sedating by far. In research, in a forced dose titration, pushing the dose to see the safety parameters for FDA review/hopefully approval, they showed only 6% as compared to placebo 4% hypotensive reaction in a study with over 500 6-17 yr olds. Sedation was the biggest side effect, but I use sedation as an indication to find the top of the window for proper dosing. I will be writing a blog on Intuniv soon, as folks do need more info. Bottom line he sounds like a perfect child to give Intuniv a try.
My colleagues who have done the research had the same take as your doc, even knowing it wasn’t like Clonidine per se, and have been uniformly surprised at the excellent response with kids just like Jack – in fact Jack is their main focus – the oppositional, irritated, frustrated child with ADHD. Titration strategy is with the package, completely simple – here is an audio cinchcast I did on Intuniv [summary of NYC Satellite Meeting], and another on dosing is on the way, somewhere in the ethers apparently, at this moment.
Beyond the meds, if that doesn’t work, I would look very carefully at immune dysfunction, bowel challenges and is-he-a-picky-eater? status. If he doesn’t fit one or all of those, I will be surprised. If he doesn’t the very next intervention, mandatory in my opinion – having had so much good response to neurotransmitter testing – is a complete NeuroScience Lab workup. Yes we can do it, but perhaps you can find someone in your town who can read and recommend locally at that link on their website.
Many more options, and you don’t have to just do one. I would try Intuniv, it’s an easy, safe start, and do the rest anyway. If we can see what’s going on with his brain, why not?
cp
Dr. Parker –
I appreciate your quick response to my comments regarding my son. I will take your advice and ask his doc to prescribe Intuniv. Is there a problem with abruptly switching from Clonidine to Intuniv? In response to your other question, Jack is a very picky eater and is easily “grossed” out by the look and texture of certain foods. In terms of his immune system, he tends to catch every virus that comes along.
I am very open to Neurotransmitter testing. I live in Omaha,NE and wonder if I could have it done here at the NE Med Center or another medical facility. I have good friends in Richmond, VA and since I visit them periodically, I could coordinate an evaluation and testing of Jack at your offices.
Thank you again for your feedback.
Kate
Kate,
Look forward to talking, yes we can connect by phone, and regrettably don’t know anyone out there close to this kind of comprehensive intervention strategy.
One additional point for any readers starting Intuniv with a similar child: Go low and slow, even more low and slow than the package insert recommends [maybe he will nly need 1 mg in the AM?], and don’t be disappointed if he can’t take Intuniv at all and has an ‘unpredictable’ angry reaction. I do think Intuniv very well might work, but with immune dysregulation so likely, the entire sweep of easily measurable Neurotransmitters can be markedly off balance, – and these are the very people that appear to have a reaction to Intuniv. I only had one bad reaction to Intuniv so far, and the NT testing showed exactly what I am telling you.
The good news: we’re getting your guy on track one way or another!
cp
Hi Kate,
It’s the rare physician who is so generous with information at a website or blog. Dr. Parker has helped many people who were failed by other physicians.
I had to laugh at your son’s comment about gravity. My husband, did, too. He said it sounded like something he would have said as a 7-year-old.
Hang in there and best of luck,
Gina
Gina,
My grandson had a great comment the other day that bears repeating: In the process of changing his diaper, my verbally adept daughter-in-law commented on his anatomy, saying “Yes, that is your penis.” As an old soul with great timing – in an infants body – he replied [will be 2 in Jan] “Boys have penises…. and…..girls have cell phones.”
I am so pleased to share these times with mavens like you, Gina. You too are an old soul with timeless wisdom, – I do look forward to chatting over coffee with you one day, and do appreciate your kind remarks.
cp
Thanks for the translation, Dr. Parker. Always welcome!
Gina
Thanks Gina!
I have two presentations this week just helping our medical family with the research and the neurophysiology – new receptors, some new neurotransmitters, and different objectives in some respects. These are not ‘product oriented’ but more neurophysiology, information to help how to understand the new mechanisms of action. Very interesting stuff!
cp