Beth - posted on 01/31/2009 ( 5 moms have responded )
I just responded to Cathy's question about Vyvance and ended up including my own about Strattera. I realize people may not see it in her conversation, so I'm starting this one.
Our son doesn't have the official diagnosis yet, but we're clearly moving toward the Aspergers/high-functioning PDD-NOS/ADHD/ODD diagnosis. (At first, they kept saying ADHD/ODD, but I kept saying, NO, can't you see the traits??? It's so exhausting to be fighting even your own husband plus docs and preschool therapist--not to mention deal with your kid--but I digress.)
He is very smart and verbal but has the usual social skills delays plus impulsivity, some of it can get violent or he can talk about being violent (not fun), plus he picks up language at the drop of a hat, both wonderful things like foreign words right down to the accent but also curse words he will use in just the right way with just the right awful town of voice. He really feels no distinction between himself and an adult. Yet there's also anxiety there, maddening perseveration, he gets a lot of power from pushing our buttons and LOVES it. We've done parent training, right down to every if/then, ignoring, positive reinforcement, now behavior plans coordinated with the school, even holds, though I hate them. (But when he runs around throwing and breaking, what choice do we have?)
We tried Vyvance after the Ritalin trial was a complete disaster--our son, then 4, was a zombie when on it, which broke our hearts, and then during rebound he would grow even more hyper. The tantrums grew even more violent and out of control, downright scary, (Note: If things hadn't been so extreme, we never would have gone with meds, but we couldn't go on the way things were.) But how upsetting to try the meds see him even worse. Yes, we were told this could happen, but I had no idea seeing him come off Ritalin would be like watching a heroin addict come down from a high in "Midnight Express."
We were told the Vyvance might be "smoother" with less rebound since it's digested through the gut. But again, we got a very hyper result--not as bad as the Ritalin, but sitll worse than off meds. Plus he grew even more oppositional, the last thing we need, pushing my husband to the breaking point one night even earlier than normal--not a good thing, since it just makes the chaos worse and heightens both of them, We quickly took our son off that medication.
The best result we have gotten so far is what he's on now; extended release of Adderall; he seems to be doing much better on it at school (he's in kindergarten). Keep in mind, he is in a very small school specializing in helping kids with behaviors. He's in a class of 5 boys with three adults in the room; man, did I have to fight for that! (I proved there was no appropriate school setting; this is a private school funded by the state.) Of course, I hope to get him into a less restrictive setting by second grade.
They'd only seen him on the Adderal, and it was clear they didn't all believe he needed it. He was doing so "great," esp. in relation to some of the other kids there. So to show them just how impossible he could be without them we did a little "experiment" and sent him off them for a couple of days, and they're sure convinced now!
I guess seeing is believing, but man did it make me angry to hear the psychiatrist who made us feel like all we had to do was calm down and then he'd be so much better--which is true, but it's awfully hard to stay calm with these kids sometimes--say, "Now that was an eye-opener." (!!!) "Yes," I said, staying in control, "he's a real firecracker." It was all I could do not to scream into the phone!
Meanwhile, there are times during the weekend when I--and even my husband, who is less likely to observe as closely (does anyone else encounter that? maybe that's another conversation!)--see a rebound both about an hour after we give him the Adderall and again around the time he's coming off it. Then again, it can happen throughout the day, so maybe it just isn't really working that well at all!
Now the psychiatrist and psychologist at the school--yes, they have both there--think we should do a shorter-acting, lower dose of Adderall in the afternoon to help us with him at home, but I worry about side effects on appetite, sleep. He's already a little guy and gives us trouble with eating at 5.
I keep asking them about Strattera. I've heard it works well for some kids on spectrum, also helps with the perseveration, which drives us crazy. They keep saying "it only works for some kids." Well, what if he's one of them? Also, they have to be able to swallow a pill, which he can't yet, but we could work on it. I just don't know about any of these stimulants. Another thing I've heard about Strattera that would be a huge plus, besides it being a nonstimulant, is that it would be in his system 24 hours a day. I have an AWFUL time getting him ready, out the door and on the school bus in the morning. Any feedback would be greatly appreciated.
Signed, Desperate (and wondering what we're going to do--he's only 5!)