Bumpy Road Ahead

Cordy has spent much of her fifth year of life involved in a clinical research study. We volunteered her for this study of a known medication used to treat ADHD because we hoped the researchers were right and it might also help children with autism who have ADD symptoms. We knew it involved a lot of time on our part, and a lot of uncomfortable situations on Cordy’s part, but we also knew that something else had to be done to help her cope with her world.

It’s been a roller coaster of a ride so far – first we completed ten weeks of the blind study only to find that she was on the placebo during that time. Then we entered into the longer open study, where the medication has been slowly increased and then backed down when Cordy began to show a side-effect of irritability. Cordy has been amazing through all of this, happily swallowing her pills twice a day and enduring blood draws and cognitive testing with (somewhat) little drama every ten weeks. It probably doesn’t hurt that she really likes the research team and they fill her full of Annie’s fruit snacks and animal crackers at each visit.

We’re now nearing the end of the study and while her focus has improved and her repetitive behaviors have decreased, she’s still rating high on hyperactivity and impulsivity, and the irritability never went away. At Friday’s visit, the study doctor determined that she has only moderately improved on the study medication, and the irritability side effect concerned him. As a result, a decision was made to quickly taper off the medication and consider the possibility of a different medication for her. The catch? She’s going two weeks with no medication whatsoever before we’ll look into anything else.

It’s possible this will be a great two weeks. We may find that her improved focus and decreased repetitive behaviors have become learned behaviors and she will do just great with no medication at all. I would love for this to be the case, because while I’m open to medication I’d prefer if she didn’t need it.

But it’s the opposite end of the possibility spectrum that worries me. What if she goes right back to her old behaviors as soon as the medication is out of her system? She could regress to a point where she stares blankly at the TV and shrieks for more if we try to turn it off, or refuses to do anything that requires a sustained mental effort of more than 30 seconds. The flapping could come back full-force along with repeating phrases over and over.

In other words: I’m a little scared. I’ve seen her grow so much over the past few months, developing into a child who can now make friends at the playground, who can write entire sentences and read books and do math problems, and I don’t want to lose who she’s become. It’s already hard for me to accept that she will continue to be in a special-needs classroom for kindergarten next year (with some inclusion in a mainstream kindergarten), but the thought of losing even a little of this progress we’ve made…

Of course, it’s unlikely she’ll fall into that worst-case scenario. But it’s also equally unlikely Cordy’s behaviors will follow the best-case scenario, either. Which means we’re stuck somewhere on the spectrum (and yes, I’m including the double meaning of the word spectrum here), hoping to be higher than lower.

Her last pill is this morning, and then we simply wait it out. If she does regress, we will then meet with the study doctor to consider another medication that might produce the same effects of the last one without the unpleasant side effects.

Let’s hope this “detox” goes well for her or I may be the one needing medication at the end of these next two weeks.