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Parents of ADHD Children

Have any of your children been given more than 60mg ritalin a day

My DS is 8 years old and has high functioning autism and ADHD (moderate to severe combined type). He is currently on 50mg short acting ritalin a day. For the first year of taking it his dose increased quite a lot but it has stabilised at this dose for a year now. It seems to suit him and he does not have any side effects from it. We tried concerta but it did not work for him. I am getting a bit worried though as I am concerned about where we will end up with his dosage as he grows. He has a very good psychiatrist who has assured me that there are always new meds to try and that you can go above 60mg ritalin if needed. I am concerned about the idea of doing this though.

Without his meds, he is very hyper (not aggressive though) and can not concentrate at all to the point where he can not be in a mainstream classroom without them. He was in special school before he was diagnosed with ADHD and having behavioural therapy but he was still very loud and disruptive in class. The way I have looked at the meds is that it is enabling him to progress massively developmentally as he has benefitted so much from being able to access mainstream school. He has behavioural therapy too but frankly unless he is medicated attempting behavioural therapy is ineffective with him.

As I say I am worried that we have little wriggle room medication wise before we hit 60mg. So I was wondering what others experiences are of how much doses go up with age and if anyone has had a child on a high dose like mine or gone over 60mg a day and how you have found it to be? Do ADHD Children get less hyper with age?

Replies

My son is a fast metabolizer of meds, too.  When he was on Metadate CD (methylphenidate), the drug was only helping until lunchtime, at the latest, so he was up to 80 Mg.  EIGHTY.  I did not like that at all, so I told the doctor it was time to try other meds and bring him back to a starting dosage of something.  I know there are people who will say everyone’s different, and maybe he could tolerate high doses, but I didn’t like it.

He ended up on Adderall, after going to a child psychiatrist to manage his meds, and this doctor kept increasing doses every time I told him I thought my son was one of those unfortunate kids who just didn’t respond real well to stimulants. They help a little, but that’s about it.  He needs to learn different methods of dealing with his difficulties, as the meds just aren’t helping much.

So, this doctor kept increasing him until he was up to 60 mg of Adderall.  He was talking about going to 80.  Forget it.  I ended up changing doctors, and I’ve found one who agrees that my son just won’t do better with increased dosages.  Matter of fact, we have cut the Adderall in half so that he’s back down to 30 mg, and we are seeing NO difference in his focus/attention abilities on the 30 as compared with the 60.  None at all. If anything, lowering the dosage has helped his anxiety, as higher doses of stimulants can worsen anxiety.

He is doing better now than he has in a long time as far as productivity at school and anxiety issues, so things have improved.

Hope you can find a good balance for your son as well.  I think exercise, extracurricular programs, social programs and possible therapies are more effective than drugs alone, and the drugs certainly shouldn’t be your sole treatment.

So, there’s my experience. Hope it helps. smile

Posted by JAMurphy on Mar 08, 2014 at 7:16pm

Maybe and extended release of the medication. My experience has been that 60mg is the maximum dose per day. (But I am not a dr)

Posted by Speduc8r on Mar 08, 2014 at 7:51pm

Yes, I think extended release is the way to go for during the day.  I only use short-acting for those days when my son needs a boost to get through homework time.

Posted by JAMurphy on Mar 08, 2014 at 7:58pm

I tried him on Concerta which was almost as if he was not medicated at all, even if we gave him short acting meds first thing to kick start the dose.

The doctor has suggested Vyvanse (lizdexamphetamine) but I am reluctant to change whilst his methylphenidate is working. It is more long term with the methylphenidate that concerns me.

He is on an ABA behaviour programme and has a behaviourist who works with him as well. I do extra curricular stuff like swimming and horse riding with him and trying to get him into a beaver (scouts) group. Exercise does help a lot but he runs off and can not be trusted around roads at all so I am nervous of taking him out on long walks on my own

Posted by catgirl on Mar 08, 2014 at 8:38pm

My understanding of stimulants is that you titrate to effect. Meaning that one child may require only a small dose and another may require a larger one even though they are the same size. Stimulants aren’t dosed by age or weight.

My son requires pretty big doses. He metabolizes meds very quickly. He currently takes 60mg of Vyvanse and gets small short acting booster doses in the evenings as well.

My son also takes Intuniv at night. Have you ever thought about adding that in for your son ? It’s a nice additional medication that many people use with their daily stimulants. It helps with hyperactivity, impulsivity and the emotionality that goes along with ADHD. We saw a very positive response when we added it in. You might be able to avoid the higher stimulant doses if you were to add it in.

Good luck!

Posted by JS on Mar 08, 2014 at 9:01pm

What your “very good psychiatrist” said is true, you can go above 60mg Ritalin if necessary.  The established guidelines for “recommended maximum daily doses” are just that—guidelines.  And these guidelines were established merely to give clinicians (and patients) a general idea of where the majority of people will fall in terms of daily dosing.  There have always been people whose dosage ends up being greater than the “maximum recommended daily dose” but the numbers of people who end up on greater than that is small enough that those guidelines don’t end up being changed very often. 

When and if a large number of clinicians start to see that there is a high number of people who are above those daily max doses AND those same clinicians start reporting this to the pharmaceutical companies and/or in peer-reviewed journals EVEN THEN changing those published guidelines is often woefully slow and imperfect. 

The following information was “accurate” as of a couple years ago (but may have changed since then).  The “recommended daily max” for Vyvanse (a relatively new drug) was originally established to be and published as 70 mg (yet over time a large number of clinicians were reporting that they had a number of patients who required more than 70 mg to achieve “maximal” results without experiencing additional side effects).  Nevertheless, the pharmaceutical company wouldn’t produce anything higher than the 70 mg capsules, and the Canadian pharmacies refused to change their own “guidelines” and stock anything greater than the 50 mg capsules.

So in the US we could buy Vyvanse in 20, 30, 40, 50, 60, and 70 mg capsules (and many patients took either 70+20 or 60+20)...and had to deal with insurance companies giving them a hard time about having two separate prescriptions for Vyvanse…etc…

Whereas, in Canada every single person who needed 70 mg had to deal with that same problem of having two separate prescriptions for Vyvanse (50+20).  I don’t know if Canada has finally upped their “recommended daily max” to be the same as in the US or not. 

It is unfortunate that many patients will look at these “recommended” daily maximums and think that they really “mean” something more than what they do.  Some patients will start to freak out when/if they find out they are taking more than the recommended daily max, thinking their medical provider is trying to “overdose” them.  Some will abandon a perfectly effective drug because they just don’t like the thought of being somewhere near the maximum recommended dosage.  Some patients look at the dose someone is taking of a drug (say 70 mg of Vyvanse) compare it to their own dose of 40 mg of Vyvanse and assume the one taking 70 mg has a much worse case of ADHD than their own (when in fact it could be the exact opposite).

Posted by BC on Mar 08, 2014 at 10:10pm

BC is right in that some people place too much stock in the “recommended daily maximums,” and the trick is to closely monitor each child and do what works for them.  While some people are fine with taking twice the maximum, some other people find no improvement in symptoms when trying higher and higher dosages, and may be reluctant on a personal level to give so much medication.  I, for one, don’t believe in giving medications when it’s not justified.

In our case, there was no difference in abilities with the 60+ mg vs. 30 mg, so we dropped back down to 30.  It all has to be based on your child and his reaction to the meds. If the higher dose is helping him, and he tolerates it well, I wouldn’t worry about it.

The addition of a secondary drug, like Intuniv, is an option that works well for a lot of kids, too.  We tried it twice, but it made my son so sleepy he couldn’t function.

There are so many combinations you can try and so many other therapies and activities that can be used in conjunction with the meds.  You have to find the right mix for your son, and it can take a while.

Posted by JAMurphy on Mar 09, 2014 at 12:07am

I feel better about the dosage now, thanks. I think it is easy to frighten myself by reading the horror stories about children that die suddenly from heart problems while tacking Ritalin. Luckily, my DS is a very healthy child and is very rarely ill but it is still worrying.

Couple of questions re meds: What is Intuniv? How do Vyvanse dosages translate relative to ritalin equivalent dosages?

I find the hardest times with DS are between 6am and 8am before he takes his meds and then after about 6.30pm in the evening.

Posted by catgirl on Mar 09, 2014 at 12:34am

“How do Vyvanse dosages translate relative to ritalin equivalent dosages?”  I’m not sure if I completely understand the question: 

• if the question is what are the “recommended” ranges of dosing for the two—for Ritalin IR it is 5-60 mg PER DAY in divided doses; for Ritalin LA it is 10-60 mg PER DAY once in the AM; for Ritalin SR it is 20-60 mg PER DAY in divided doses; for VYVANSE it is 20-70 mg PER DAY once in the AM.

• if the question is what would be an equivalent Vyvanse dose of Ritalin XX—there is no conversion factor for that because Ritalin is a methylphenidate and Vyvanse is an amphetamine.  Someone who responds to taking a methylphenidate may not respond at all to any of the amphetamine class OR they might find they respond to both classes but one class is clearly superior to the other…etc.  Being a high metabolizer of the methylphenidates (need higher doses) doesn’t mean you’ll also be a high metabolizer for amphetamines (if amphetamines work at all).

Posted by BC on Mar 09, 2014 at 2:07am

Here’s a link for What is Intuniv?

http://www.corepsych.com/2013/12/intuniv-for-adhd-details-updated/

Posted by BC on Mar 09, 2014 at 2:20am

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