weening him off his meds.

Post Reply New Topic

Hi All,

It's been a long long time since I've been on this board, it's nice to be back.
I just needed to air my thoughts to those that would understand. About 12 months ago my aspie son (now 11) was having a really tough time, with anxiety, ocd and adhd behaviors. I had taken him in to see a team of docs and he had been clinically dx'd with not just asperger's, but now generalized anxiety disorder, ocd, adhd and tourettes. Cognitive behavior therapy was tried but unsuccessful. So meds were tried, half a tab for the anxiety (it was really really bad) and then a few weeks later a low dose of something for the adhd. I didn't want my son on any meds at all, but things were bad. Over the last year his adhd meds have slowly increased in strength, So that for the past 5 months he had been at the higher recommended strength for his age and weight. His anxiety meds have always stayed at just half a tab. Anyway I have been wondering if during this time ( more this year) if because his adhd meds have appeared to work fairly well and he's less of a distraction and less demanding and time consuming in his school class that less supports have been put in place. He still tells me that he has probs listening, understanding etc, but now thanks to the meds I think he is less vocal about it. Sooooo, I seen his ped last week and we are pulling the adhd meds slowly away, but we are not telling school. School need a wake up call. I also don't want them to see things that aren't there or to dismiss things that are. My son needs strategies put in place before meds, and these stratergies weren't happening because he'd I believe he would be kinda zombied out. His sleeping habbits had also become really really bad, they'd always been not so great but lately they were worse. He would have probs falling asleep, then sleep for 14 to 15 hours if left. I was waking a very cranky boy every morning for school. Since I've started weening him off he has been waking easier. Last night though getting him to sleep was difficult. Actually from the time I picked him up from school was a little difficult. He is much happier (more personality) but oh my, you can now see the adhd. I have decided that if his grades stay the same and don't plummet without meds and even if his behavior is all over the place as long as he isn't asking for the meds back he won't be put back on them, some how we will have to deal with what ever comes. Prior to meds his school were trying for funding, this year there has been no mention of it. It has been really exciting for me to see my boy's personality coming out again. He was kinda flat and disinterested on meds. Any way I've gone on long enough, thanks for listening all who made it this far.

It sounds like he was over-medicated on the adhd meds - and schools do tend to like that, since kids tend to be zombied out, so they're much easier to handle. One of my kids (NT) was "tried" on adhd meds (inattentive variety adhd), and happily, he was self-aware enough to be able to tell us that when he was on the meds, while he was drawing more (in art class), he was drawing the same things repeatedly, so it was not productive drawing. He also felt like he was "watching himself" rather than being part of his life - it was like he was observing his life instead of living it. His doctor said it was overmedication, and there was no way to medicate him appropriately. So for him, there was no medication.

Another of my kids (also NT) was tried on adhd meds, and school LOVED her on them. She was a total zombie. We hated her on them, and especially, we hated her "rebound" when the meds wore off - they told us that her "over the top" behavior, with tantrums that were unbelievable, were just the way she was without medication, but it wasn't - it was a rebound from the meds. She wasn't learning in school, but she wasn't a problem, so they didn't care. We took her off them, and never looked back.

Our Aspie is on anti-anxiety meds - he does not have adhd. They have been an absolute necessity for him. I know we sound like we are heavily into meds, but we aren't - we hated using meds every time. Our NT son tried them only very briefly, and when he was old enough to be part of the decision-making process and wanted to try them (for concentration). The other two were just in such tough situations that we had to try something. The anti-anxiety drug needs to be watched carefully - overmedication can cause aggression; undermedication leaves a child still anxious. It's hard to know where one leaves off and the other begins. But it won't just "solve" things - if school is presenting an anxiety-producing situation, accommodations/modifications need to be made. That's probably why they like the adhd meds so much - it's much easier to deal with a zombie than modify the situation so the anxiety is alleviated.

Meds can be a useful tool, but learning to adapt one's difficulties to real life is even better. Going off medication can be difficult and scary, but hopefully things will settle out and your son will learn to manage many of his issues on his own. Be patient with the process. I believe in this decision you've made, but having recently pulled off a long time med myself, I can say that you shouldn't be shocked if there are some bumps. I'm just started to feel "normal," and it's been a while since I finished the phase out.

Thanks for sharing your story.

Did you only try the one med? It sounds like you didn't really get a chance. My children have all taken ADHD meds, and so do I. My eldest had to try at least five things before we found one that worked OK without causing problems. Middle son had nearly miraculous results with the first thing he tried with absolutely no negative side effects. It's not unusual to need to try a couple of things before one works without problems.

I would NOT see a pediatrician for these kinds of medicines. They do not have the depth of knowledge and experience to really do it right. A pediatric psychiatrist is the best choice especially if you can find one who deals a lot with children in the spectrum.

I'm all for not taking meds when they aren't needed, but for a lot of people they are very helpful. Behavioral therapy is also extremely important with or without meds. For some people behavioral therapy works a lot better when they have the right med.

Yes this was the first adhd med that was tried. My son can't have the traditional ones because they have a tendency to make tics worse, my son already has a tourettes dx as well.
Behavior therapy was tried but at this stage unsuccessful. His meds were originally prescribed by a pediatric psychiatrist who specializes in kids on the spectrum, and now our ped follows up.

I didn't know they'd make the tics worse, but that makes sense. My eldest is bi-polar and the ADHD meds make that worse so he can't take them anymore. Before that developed they were very helpful for him. I've known a few kids who were put on one med by their ped who prescribed whatever the most recently seen drug rep was pushing. They stayed on that one med for years despite nasty side effects. Nobody ever mentions trying a different med, and they just suffer with it.

ADHD meds should not suppress a child's personality, if anything they should help them be more themselves. When I see words like "flat" and "disinterested" and "ped prescribed ADHD meds" I'm concerned.

Middle Son's personality totally blossoms on his ADHD meds. He doesn't like to eat much when he takes them, but there are no other downsides at all. His medication works really well on his symptoms. I wish it were always so simple.