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.

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Comments

  1. First off, I love that you quoted The Princess Bride. Inconceivable!

    Secondly, don’t beat yourself up for medicating your daughter. You are a very smart woman who has done her research. You felt this was the best for Cordy and it so far seems great. Sometimes medicine is a wonderful help. I hope it proves true for Cordy. Hang in there and good luck!

  2. I think this sounds fantastic. What a great opportunity for Cordy. I’m really interested to hear more about it. My sister finally medicated her son for ADD in 4th grade, and it has made a WORLD of difference for them.

    On another note, have you tried any of the food regimens? I”ve been hearing a lot about them lately and have a friend who is considering trying that for her own kid–just wondered what you thought of it. I’m talking about eliminating things like artificial colorings, hydrogenated oils, gluten etc.

  3. When I hit the Princess Bride ROFL!!! The thing to remember about medication and kids is that as long as it’s therapeutic for them, not just for you, you’re probably doing the right thing. And I know you would NEVER medicate her for just for you. As a nurse and a mom you are too ethical. Let go of most of the guilt honey. ( I know, moms can never let go of all the guilt!)
    :-)

  4. The Princess Bride quote = genius!

    My son has issues not to the extent of Cordy, but enough that he’s definitely not the popular kid, and his academics are brushed aside. It’s a constant battle with the school.

    So, we work with him at home and we are constantly vigilant to his tells. This year, we’ve struck gold with his teacher and I wish so much that she could just move up with him through the grades.

  5. I was DEAD set on NOT medicating Olivia (she has ADHD and is gifted). But, we did K in school and it was HORRIBLE.. it broke her emotionally. So, we pulled her home and I homeschooled her for the rest of it and 1st grade without meds and at the end of last year, I was broken… She is SOO smart and could give me verbal answers but anything else sent her to tears of frustration by the time we were 1/2 way done. She’s now on Vyvanse for 2nd grade and we’re homeschooling and it’s SOOOO wonderful. She can focus and is BREEZING through things that last year were impossible for her. It’s given us the best version of our daughter.

    Dont beat yourself up about it!!

  6. This sounds really great, hoping that Cordy will help these studies go far.

    (((hugs))

  7. @Piece of Work,

    We tried some of the food regimens to some extent, and they had some effect, but frankly, we couldn’t keep them up, both due to cost and due to times that other people feed her. We have, however, determined that the less artificial dyes and colors that get into her system, the better she is. Especially when it comes to blue dye.

  8. Never go against a Sicilian when death is on the line!

    Anyway, you get brownie points from me, and here’s why:
    I hate medicating kids. I’m a psychology major, and I work in a pharmacy. I’m pretty much required to feel that American parents under-parent and over-medicate their children.

    You are the SHINING EXCEPTION to that rule.
    You are an attentive, caring, FANTASTIC parent. You have tried multiple behavioral treatment methods for Cordy’s symptoms, both in school and at home; you have had her evaluated multiple times in multiple settings by multiple clinicians; and you have educated yourself about the medication she is/may be receiving.

    In short, you rock.

  9. I’m not all that in favor of medication myself, however, there are instances and situations when medication is the best option. You and your doctor are the only ones who get a vote in that decision. I am seriously considering medication for our oldest who has Aspergers with ADD tendencies. Would you e-mail me privately and let me know the medication involved in the study? amthomas718 @ mac.com Thanks!

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