Just before Christmas, Cordy finished the first ten week segment of the clinical research trial I took a gamble on earlier in the fall. The study offered us the chance at parent training in behavior modification and/or a medication that can help attention-deficit symptoms in children with autism. In our case, we were randomly selected for the medication-only group, not knowing if we had the actual medication or a placebo.
At the end of ten weeks, the results were less than encouraging. Cordy’s behavior was practically unchanged. Still unfocused. Still unstoppable energy. Still struggling to finish a task without becoming distracted. But there were a few small changes that showed a glimmer of hope. In that ten week period, she stopped hitting herself, and although she switched to verbally abusing herself instead, it was still an improvement. We also noticed a slight decrease in the amount of “flapping” she does, too.
So did we have the medication? If we had the medication, I felt it was a big, fat failure. I mean, I wasn’t expecting miracles in a pill. I knew it could help calm Cordy and help her focus so she could accomplish more, but I knew it wouldn’t turn her into a typical kid. But I was expecting a little more than a couple of stray behavior changes.
At our last meeting, the doctors in the study looked through all of the data and determined Cordy was a non-responder. As a result, the seal was broken to find out the truth: it was the placebo.
I was a little disappointed that I forced Cordy to go to weekly visits, endure two blood draws (not fun for anyone involved) and take a lot of pills for no benefit. But honestly, it wasn’t that bad. Cordy quickly loved going to “the office” as she called it. She loved “her work” and the student assistants who work there became her willing slaves. All of the staff have been incredibly kind to her. While at each meeting, she was given an unlimited supply of organic fruit snacks, animal crackers, juice, toys, markers and adoring fans. Hell, I kinda wish I got all that stuff instead of a big stack of papers to fill out each week.
But it doesn’t end there. That was just part one of the study. Knowing that she was on the placebo, we are now entering the open-label phase of the study, allowing her to start all over with the actual medication this time. (Those who were on the medication in phase one are allowed to continue on the medication for phase-two.) The dose will be increased ever-so-slowly and we’ll watch her closely for any improvements as well as any side-effects.
I’m back to being excited at the possibilities and yet again a little nervous about medicating my daughter. Only this time I know for certain it’s the real thing. We’ll see what happens.
To end on a cute note: I was told by Cordy’s teachers today that all of the boys in her class are in love with her. Not just love her – are actively IN LOVE with her. They’ve been back from winter break for just two days now, and apparently the boys pester Cordy all day with, “Do you still like me, Cordy?” She’s the queen of the classroom, with five little boys willing to do anything for her. I love that about her – despite her social difficulties, she has an aura that attracts people to her, even without trying or encouraging them in any way. It’s an amazing gift to have.
Hi! I’ve subscribed to your blog for awhile now and recently found out that we know people who know people! Like the 6 degrees of separation thing, but not that many degrees. I know Lori Sachs very well and you are her daughter in law, I think? Anyway, just wanted to say hi to a fellow Columbus blogger. It doesn’t seem like there are too many of us. 🙂
I’m excited for you and the posibilities. I know for some, the medications can make all of the difference. I hope this one works out for you.
On the bright side, at least the fact that she was on placebo means those minor improvements you saw in her symptoms were happening due to what you are already doing to take care of her and what her brain is already doing to adapt to the bewildering neurotypical world.
That’s actually something to be really proud of, isn’t it? Cordy stopped hitting herself because of YOU and Cordy. You’re both doing a really good job. I hope the medicine works, but I have a feeling that either way Cordy is looking at a successful future thanks to her determined mother and her own strong will.
Regarding the boys — Cordy seems like just the sort of girl my son would fall for, too. He likes little Amazon warrior princesses.
found you on Mom 101 and will have to be back! good luck!
Dude, boys totally digg on the ADHD girls! My best friend’s daughter has it, she’s 7 and in 2nd grade and almost all of her friends are boys because she is physical and daring and will actually PLAY with them!
I hope that things go really well with this new trial, it sounds like a good thing!