Monday, November 28, 2011

Treatment and taking risks

Tourette's is definitely not the easiest disorder to treat effectively. There is no medication currently on the market that has been designed specifically for Tourette's, though many people do find relief from SSRIs and antipsychotics. Perrin has been on risperidone, an antipsychotic, for 2 years now, and John was on haldol for many years as well. While they do help with somewhat with tics and mood regulation, you are also battling some pretty nasty side effects, both short and long term. Risperidone can cause high cholesterol and diabetes, which both run in my family, so I worry constantly about what these drugs are doing to Perrin's body. He also takes Daytrana for his ADHD, which does give him added concentration and improves his impulse control, but it also alters his personality. He goes from his bubbly and fun self to a very serious and somber kid for the 6 hours that he wears the patch. For years, we've been on this vicious cycle of medications, and for years I've been researching alternative remedies.
One of these methods is neurofeedback. I heard about this process about a year ago through some of my friends with children on the autism spectrum. I had heard that many of them had seen improvement with mood as well as ADHD symptoms. It sounded too good to be true, and at such a hefty pricetag - 2 sessions a week at $100 per session for up to 40 sessions - it really wasn't an option we truly considered. Until now.
The catalyst for this decision was hearing that neurofeedback may actually retrain the way Perrin's brain processes, and that if it works, could be permanent. I feel that, at this point, it's crucial to Perrin's quality of life now and in the future, to exhaust all possible avenues of treatment. It can't hurt him, and there are no horrible side effects that we've seen with medication. So why the hell not?
Step one was getting a qeeg done. I called and spoke with a neurologist who performs the neurofeedback at the office of Perrin's neuropsychiatrist, and he talked me through the entire procedure, what to expect, what to look for in a facility. We had Perrin's qeeg last week at Neuroconnections with Ann Rigby. Here is more information about brain mapping and neurofeedback
She was very informative and professional, and she gave me a social story for Perrin with instructions on how to practice with him. On the day of the qeeg, he had to sit still for 10 minutes with his eyes open and 10 minutes with his eyes closed. Not so easy for a kid with tics. But he and I practiced for a week before, and I explained in detail, exactly what he could expect. He was actually kind of excited about the whole thing.

Even with this tight swimcap type contraption on his head and clips on his ears, he rocked it! He really enjoyed watching his brain waves on the screen, and I gotta admit, it was very hypnotic. He had a few tics, and there would be a spike on the screen, but Ann was very good at reminding him to be still like a statue, which is the wording I used during our practices. Twenty minutes later, he was done. We get the results on Wednesday, which we are hoping will show the areas of his brain that need to be "retrained," which is the term they use to describe how neurofeedback works. Go brain!