Guinea Pig for Hope

Wow, I’ve been away for a week, eh? That was unintentional. This past week I completed my orientation at work and began my time on night shift, working 7pm-7am. So far? I’m in a fog. My brain and biorhythms can’t tell if I should be awake or not at the moment, leaving me staring at the wall wondering if I’m really awake or just dreaming I am. I’m told it gets easier, so we’ll all cross our fingers and hope that’s true.

Even my days off haven’t been very restful. Something I haven’t shared with everyone yet is that back in September we enrolled Cordy in a clinical drug trial at OSU’s Nisonger Center (University Center for Excellence in Developmental Disabilities). The Nisonger Center is an incredible resource for parents of children with autism, and I’ve been watching their research studies for a couple of years now.

I’ve considered clinical research studies for Cordy in the past, but never requested more information because either 1. Cordy was too young for the study, or 2. I didn’t feel comfortable putting her in anything I considered risky. Unless the risks are slight, I’m not willing to let Cordy be a guinea pig, even if that research could be the key to unlocking new treatment options for autism spectrum disorders.

However, this particular clinical trial caught my eye. It’s a study of an ADD medication for children with autism who also have ADD symptoms of hyperactivity and/or inattentiveness. The drug is already in use for children with ADD, the amount given in the study does not exceed recommended dosing guidelines already in place, and this drug has a very small list of rare, severe reactions, all of which are completely reversible by stopping the medication. Feeling like it was a relatively safe trial, I called and signed her up.

The first few meetings involved several screenings. Even though she already has a diagnosis, they had to determine for themselves that she really is on the spectrum with ADD-symptoms. By the end of those tests, the doctor in charge determined she was a perfect fit for the study. Then came all of the medical tests to be certain she has no underlying health problems. A blood draw was required for that, and I won’t even go into the horrific details of how that went. Let’s just say that they got to see Cordy’s full meltdown, and again I’d like to apologize to the nurse who took the flying shoe to her head.

One of the more pleasant parts of the screening.

Now we go in once a week for a check-up. These meetings take about two hours, where I spend most of my time filling out paperwork and answering questions about her behavior for the past week. Cordy, on the other hand, spends about 15 minutes getting a quick exam by the staff (height, weight, B/P, etc.) and the remainder of her time charming everyone into letting her do whatever she wants. They let her watch videos, give her snacks (they keep a snack drawer stocked with organic snacks!), surround her with toys and paper and markers, and the student workers are thrilled to play with her. One in particular has said he wants to be there on the days when she’s there, because he likes hanging out with her. All together now: awwwwww!

At the end of the meeting, I get another week’s worth of medication for Cordy (they’re slowly increasing her dosage) and Cordy, already stuffed from Annie’s bunny fruit snacks, gets to choose a prize from the prize box. As you can guess, she now loves going to Nisonger, calling it her “office” and saying she “has to go to work.”

We’re only on week four of the ten week study, and we don’t know if we have the actual medication or the placebo. The medication also takes 4-6 weeks to build up in the system. The good news is that we’ve yet to see any of the possible side effects listed for the medication. So we could have the placebo. However, in the past week we’ve also noticed that Cordy’s repetitive motions (running “laps”, flapping, awkward limb movements, etc.) have dropped off dramatically. So we could have the actual medication. Of course, it’s supposed to help with ADD symptoms, not repetitive motions and flapping. So we could have the placebo. And at this point my head starts to spin as I think: And you must have suspected I would have known the powder’s origin, so I can clearly not choose the wine in front of me…

So whether we have the real medication or not, we’re not seeing a lot of results yet. But that doesn’t mean they won’t come. And at the end of the ten week study, we have the option of entering an open study where we can try the actual medication if we had the placebo.

I never thought I’d be a parent who would medicate her child. But with kindergarten looming in the distance, Cordy’s lack of attention and focus is a concern. This is her last year of being in a special-needs classroom. Next year it’s the real deal – mainstreamed in a class of typical kids. I worry she’ll be eaten alive by kids who will pick up on her differences. I worry she’ll have trouble sitting still. And most of all, I worry she will be left behind academically, as the quiet girl who doesn’t cause any trouble, but also doesn’t have the focus or drive to apply herself to her lessons.

She’s generally not disruptive in the classroom, but her quiet zoning out could easily result in her being lost in the crowd. I can see her being the sweet child in the back of the class, distracted by her own mind and all of the sensory onslaught around her and then struggling when it’s time to prove she learned anything at all.

Right now she gets personalized attention in her special needs pre-K, but next year she’ll be lucky to share an aide in a classroom of 20+ kids. At this point we can’t even guarantee a shared aide. While I plan to work with her at home as much as possible, I can’t be in the classroom with her, meaning I’ll exhaust every option to give her the best chance of success at school.

I have no idea if this trial will work or not. And if it doesn’t, I’m back to searching for more options. But right now it’s buying me just a bit of hope that we’re moving in the right direction a little faster.