Sunday, August 7, 2011

Chemistry Experiment

Yup.....I'm engaged in a chemistry experiment. And the subject.....my daughter, Rachel. We started pumping her small body with (very very VERY) small amounts of medication to help her master her impulses.

Specifically, we started giving her a drug called Focalin. It is very similar to the more commonly known drug, Ritilin, but it's supposed to have eliminated one of the key side effects (its effect on appetite). Otherwise, the mechanism by which it works is, in theory, the same. On Friday, I met with the developmental pediatrician and we discussed a few medication options. In my opinion, this was the best. It's a short-acting stimulant that, once it's out of her system, it's pretty much gone. If we don't like what we see, just deal with it for about 4 hours and then we're back to where we started. But because it is so short-acting, she will likely need more than one dose to get her through her day at school, or we may have to time things differently.

Before beginning treatment, the doctor, Kevin and I sat down and developed a short list of measurable goals to track for success or for failure. They really are quite simple and reasonable. (1) She needs to be able to sit in her seat for mealtimes (target 15 minutes), (2) She needs to be able to follow the group in her weekly gym class (class lasts for an hour) without aimless wandering, (3) She needs to be able to listen to books before bedtime, and (4) We would really like to see some growth in the joint attention skills (more eye contact, in particular). We are watching each of these 4 things and rating them with each dose. This way, when I talk to the doctor in a couple of weeks, we'll have a reasonable measure of how successful this medication has been and when we will have a better understanding of when we have reached our target dose.

So, that being said, we gave her the first dose yesterday morning. We cut it to the appropriate size, hid it in a blueberry muffin, made sure she ingested it and watched. We knew it would take approximately 30 minutes to take effect and that the effects would last about 4 hours. Well, we didn't have to remind her as often to keep her chair still. We didn't need to remind her to keep her hands clear of herself as we normally do. But we really weren't seeing much else. I took her to gym class and there really was no improvement there, but the class was shortly before the medication would wear off, so we don't know if that was what was really going on. Today, the results are similar. Tomorrow we increase the dose.

So yes, my daughter has become a chemistry experiment. But it's a controlled one and it will hopefully help her in ways that we can barely imagine. We've seen so much improvement in her ability to function over the last 2 years. We just need to make sure that we give her all the tools possible to keep that growth active without causing other forms of harm.

Hopefully, we have found our answer, once we hone in the details a bit more. Time will tell.

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