As many of you know, several months ago we made the difficult decision that it was time to try medication for Bud. As we have moved through this maze of trial and error I've been combing the blogs looking for some stories of actual people with actual children with ASD and their actual experiences with these medications. There is very little out there. So, for the sake of those who will someday google their way into this blog, here is a run-down of our experiences so far.
Our first trial was with Ritalin - first 5 mg, then 7.5 mg, then 10 mg. It had no effect whatsoever.
Next we tried Adderall - again a steady increase from 5 to 7.5 to 10. Adderall was a mixed bag. We saw great results - much less scripted language and more conversational language, greater focus, more pretend play. But the negative effects were significant: agitation and constant chatter or humming (not scripted language, but definitely not normal), sleeplessness, a major "crash" when the medication wore off - uncharacteristic temper and tears, accompanied by hitting his head (a behavior we hadn't seen in a long time), heightened anxiety, and loss of appetite. He also looked terrible - pale, drawn, with dark circles under his eyes. It was clearly not working.
Our most recent trial has been with a combination of 7.5 mg of Adderall and 10 mg of Strattera. Bud's doctor said it would take about two weeks to see the effects of Strattera. We saw them on day 1. Bud has been focused, calm, and engaged. On day 1, he participated in the group movement games at school - something they'd never seen before. They said that he usually looks like he's not paying attention to them and they had no idea that he'd been learning the songs and movements all along. He's using a lot less scripted language and much more conversational language. He's less obsessive about tv and computer time and is focused on pretend play. He's sleeping well and his appetite is back. And he looks like himself again - robust and healthy. We're feeling very optimistic.
Here's something I couldn't find on blogs, though I searched high and low: just how does one administer medication to a child with a limited diet whose sensory integration issues make texture and color of paramount importance? Here's what we did:
Ritalin: Ritalin comes in a white pill that can be crushed. Mixing it with ice cream was not successful, because the ice cream was too smooth to mask the powder. As Bud said "It's seeds. I want regular." Mixing it with applesauce worked well.
Adderall: Adderall comes in blue pills that can be crushed. However, it turns applesauce blue which was not acceptable. ("I want regular.") Adderall powder, however, dissolves (no seeds) so it can be mixed into juice. It also dissolves into yogurt, turning Rockin' Raspberry from a dark pink to a light purple, which was acceptable.
Strattera: Strattera only comes in capsules, which cannot be opened. This fact sent me into a panic, but as it turns out this has been the easiest medication to administer. I created a sticker chart with a big pay-off: 5 stickers yields the Boobah video he's been wanting for ages and I've been refusing to buy. Each time he takes his medication he gets one sticker. I put the capsule in jello, and he washes it down with juice. Easy way to earn a Boobah movie. (We're now on sticker chart 2: 9 doses earns a Teletubbies book. I find the sticker charts work best when the pay-off is something he knows he's not going to get any other way.) One other important step in the process: we practiced with mini M&M's before we moved up to the actual capsules. First I gave him a couple of M&M's to eat, to remind him that he liked them. Then he got to earn his first sticker by swallowing the M&M in jello without chewing. Once he mastered that, we moved on to the capsule. It worked like a charm.
There's our story. I'm still interested in hearing other people's experiences with medication, so if you've got a story to tell, please comment away!