ADHD Meds question

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OK, so I have a 6 year old son with Aspergers. The question of a co-morbidity of ADHD has always lingered out there with us and his ped. neurologist. We have always taken the stance that we are neither pro or con on the medication issue, we just want to equip him with what he feels helps him the best.

We, his school and dr have all seen a pretty dramatic increase with ADHD problems this year. He describes it as, "Mom, I feel like I have energy I can't get out, sometimes I just can't listen no matter how hard I try, I just get so angry, etc." We finally all agreed to have him formally assessed for ADHD with the BRAS? test. About 5 of us who work with him have all filled it out. The ped. neur. suggested if its a grey area she usually prefers to hold off on meds. She called today and said all of our scores came back one of the strongest she had seen in a long time. She is in NO way pushing the meds on us, but we are considering it. So I need your feedback:

Where do you start with ADHD meds? What should I be asking? What do you like/not like? What kind of problems am I not thinking about? What are the pros? What are the cons? Which meds do you like and why?

If you could stick to personal experiences and evidence and not anecdotal conspiracy theories, that would be helpful to me.....

thanks
Kat

Our pediatric Neurologist tells us that trying them is almost risk free because they are out of the child's system so quickly. Our son has a mood disorder (or something ) and every time we try a stimulant ADHD med, he has a very hard time when it wears off. So difficult that the meltdowns are a given, so for us, I am not willing to go there. That said, DS couldn't learn his multiplication tables for the longest time, when we gave him the meds, he learned them in like two weeks. It was pretty amazing the difference it made for him. He would prefer to be able to take the meds, so we keep revisiting and trying new ones. I am not willing to deal with the grizzly meltdowns though.

FWIW - my DS is super sensitive to all meds. We start with 1/2 of the lowest dosage of all meds. I have read that many on the spectrum have a very difficult time with side effects and are more sensitive than most.

I know that at least methylphenidate (ritalin) is metabollized in water and exits the system very quickly. Not sure about the other stimulants but my impression is that a trial is pretty safe and if it doesn't help, there are no lasting effects.

My 12 yr old son has a diagnosis of ADHD since age 6. (He's not my AS child, at least that I know of currently. Probably we will look at his diagnosis to be sure once my oldest is finished being evaluated. Lots of gray area there.) Anyway, we had immediate, positive, visible improvement with stimulants. He had a few side effects - mild headache for the first few days, difficulty falling asleep, and appetite loss. The latter two lasted years but diminished in severity over time. But the improvement in self control (and shortly afterward in self esteem) was dramatic and worth it. He's recently switched to focalin xr after several years on concerta. Focalin wears off sooner and we're seeing some appetite improvement which he needs. He's an honor roll student and his teachers never have any idea he's an adhd kid- that's how effective it's been for us. Without the meds, I'm sure he'd be in special ed. He's in another world and is pretty non-functional without them.

He briefly tried adderall but it worsened an eye blinking tic. Also briefly tried stimulants (concerta) with my oldest..she's the AS one, but years ago when he was diagnosed we looked at her for ADD which is often missed in girls. She was anxious and miserable and it did not improve her life. We quickly ended that experiment and decided ADD was not her issue.

our ds takes medication and it seems to really help although we are about to increase his dose for the third time. he does not take ritalin as his psychiatrist said ritalin causes too many side effect problems for autistic children. they put him on Risperdone instead and he has taken to it well. he still has problems though, they are just toned down a bit to a more tolerable level.

This is just me personally - before accepting an ADHD diagnosis, I would request the doctor do actual tests rather than have people fill out questionairs about observed behaviors. There are all kinds of physical tests the doctors can do that check for ADHD.

As far as medication, it is pretty straight forward. The doc will recommend the best one for the situation and it either works or doesn't. You should know on the first day as the medication works (or doesn't) immediately.

I probably should have mentioned she did do a series of physical tests before we did our assessments. Blood levels, heart test, scans, etc.

Just curious - and, sorry, I'm no help with the original question by the OP - but have one of my own. Has anybody tried offering caffeine before trying ADHD-specific stimulant medication?

ADHD is something that's been bandied about for DS; I don't think he has it, though. If we got a diagnosis, I had always planned to get some of that caffeinated water and see if it had any effect on his behavior (and still might do so: after all, it works for me.) Just seems like it's a pretty easily controlled and fairly harmless stimulant that one would think would be a first-level response rather than the others - it would appear that it is being studied, and the main concern is that the other drugs work better.

Of all the drugs that scare the bejabers out of me, ADHD drugs seem to be the least scary and make the most sense...my only real concern with them is the propensity for abuse (not necessarily by the patient.)

Just curious - and, sorry, I'm no help with the original question by the OP - but have one of my own. Has anybody tried offering caffeine before trying ADHD-specific stimulant medication?

ADHD is something that's been bandied about for DS; I don't think he has it, though. If we got a diagnosis, I had always planned to get some of that caffeinated water and see if it had any effect on his behavior (and still might do so: after all, it works for me.) Just seems like it's a pretty easily controlled and fairly harmless stimulant that one would think would be a first-level response rather than the others - it would appear that it is being studied, and the main concern is that the other drugs work better.

Of all the drugs that scare the bejabers out of me, ADHD drugs seem to be the least scary and make the most sense...my only real concern with them is the propensity for abuse (not necessarily by the patient.)

Oh, sorry. By 'physical' I mean tests where she physically has to do things that test for ADHD such as pegging boards, frustration tolerance, written tests, etc...there are tests designed to test for ADHD and also differentiate between ADHD and other disorders that mimic symptoms.

The good thing though is if you try the ADHD meds and they work, you know you have the proper diagnosis. If they don't work, you have the wrong diagnosis and should keep searching.

Hello,

My son is 11 and has ADHD. We have tried a slew of medications..Concerta, Intuniv, Strattera, Ritalin, and Ritalin LA. This was after trying to go the med-free route for many years.

The Strattera was a nightmare. My son was having suicidal thoughts on it and would cry all of the time. The Intuniv made him very irritable. The Concerta wasn't very effective and he wouldn't eat. Ritalin made him have too many highs and lows. It also effected his appetite. The Ritalin LA seemed to be the most effective..20mg. It's like taking a 10 mg in the morning and another in the afternoon. But when I say the "most effective," that's not saying much. My son said he felt it work a 5 from a scale of 1-10. It also affected his appetite during lunch.

I am currently weaning him off of that. His doctor just prescribed Adderall yesterday, but after doing some online research, I do not feel comfortable giving that to him.

My son is also in therapy and has accommodations in school (he has an Aspergers diagnosis as well).

Hope this helped.

Last edited by kattoo13 on 30 Nov 2010, 12:09 am, edited 1 time in total.

Hi, I'm not sure what you read online about adderall. But I just want to say that I have been taking it for almost seven years, and my son has been taking it longer (with weekends and summers off). It's the only thing that's effective for either of us.

He takes the SR (or XR?) which releases the drug into the bloodstream over a period of time. He is bothered by side effects, but bothered more by symptoms, so chooses to take it for school and work. Not every time, either. His doctor is aware of, and OK with this. IMO he would have fewer side effects if he took it daily, after a time of adjustment. But he's not interested in doing that, and I'm not going to force him to take it, of course. (Well, for me it's "of course", and the only exception would be antibiotics to a very sick child, but I will not force him to take adderall. I know there are other situations.)

I am also a side-effect-sensitive person, and that's why I take the immediate release tablets. For me the most uncomfortable side effects come when the adderall is wearing off. With the immediate release, I can feel that beginning to happen and that's when I take the second dose (of three a day). And by the time the last dose is wearing off, it's time for bed anyway.

The XR or SR seemed to have a very long wearing-off period, thus a very long feeling of uncomfortableness, when I tried it (always looking for something better, because adderall doesn't work as well as I sometimes wish it would). And yet it wouldn't be good to take another dose at that point, because even after all this time, it does interfere with my sleep sometimes.

Plus it's way cheaper, even the generic. But we both find it effective, to a degree. In my case it works best within a structure, which I haven't got right now. When I had a desk job, with specific duties and a schedule, I was getting more out of the adderall.

Hi Hermier,

Thank you for your reply.

I read about some kids suddenly dying from it in the mid 90's. Professionals were saying this is extremely rare, but it really worried me. This type of article seemed to show up quite often, specifically in regards to Adderall. I also read many posts from people on another forum, who had a hell of a time getting off of it. Some other parents also said that their kids were becoming very angry on it. Your post is actually one of the few positive posts I have read.

Can you tell me what side effects your son is bothered by? Did either of you have to increase the dosage because you built up a tolerance to it? Anything else you have to share would be great.

I actually just picked up the script because I had dropped it off last night. Luckily, my son's insurance covers it 100%. Now, I'm not sure what to do. Also, his doctor prescribed the 5mg XR (we always start with the lowest possible dose), because with our experience, the immediate release Ritalin lost it's effectiveness in a short amount of time. There was also too much fluctuation in his symptoms. Almost like he would become extremely hyper when it was wearing off.

Thanks again.

this is a great dialogue....keep it coming, very helpful.

My son was on ritalin for maybe 3 days. There was an immediate improvement in his impulsivity and aggression. Unfortunately, there was also a strong upsurge in his anxiety, so we took him off it. The next med was Tenex, which has been very effective.

this is a great dialogue....keep it coming, very helpful.

Okay, as someone whom is both considered ADHD and on the spectrum I've been on some of these meds.

You really need a doctor that specializes in people on the spectrum cause some of us can be extremely sensitive to medications and the doses for us need to be a lot less than for most people.

The danger with ritalin is anxiety, loss of appetite, sometimes kids will have to have an anti-anxiety medication too. One thing though is I can't take generics as I have problems with some of them. Then there is the FDA playing politics with drug companies. At least one of the medications I was on, was discontinued because it 'caused liver problems.' Never mind the fact this individual where liver problems occurred had a long family history of liver problems and it could have had nothing to do with the med.

However, meds that work for one kid won't necessarily work for another and vice-versa.