Tourette's Syndrome - Chronically Misunderstood

Here is an image of the Schematic representation of the clinical elements of Tourette’s syndrome:

The main thing that most everyone I know thinks about when I say "Tourette's" is the tics. Tics are movements that one cannot control. People with Tourette's have what's called motor tics and vocal tics. Motor tics can range in degree from excessive eye blinking to violent head jerking. The same goes for vocal tics. Phillip sometimes does humming sounds or something like clearing his throat. Some people with Tourette's make louder sounds or say words. Some people think that all people who have Tourette's yell out obscenities. This is very rare & is what people sometimes see on television about the disorder. This extremely rare type of tic is called "coprolalia." You can learn all about tics at: "Tourette's Syndrome - Now What?"

I have to say, dealing with the kids at school last year was probably the most difficult thing for Phillip to do so far regarding his Tourette's. He started a new school. When the other students asked why he was twitching and making noises, he said he had "tics." Most of the kids thought he meant "ticks" and ran away in fear. My brave son stood up in front of the entire class about a week after he transferred to this new school. He told the other kids (5th-graders) about Tourette's. He explained about what tics are - that they are not bugs, but twitching that he cannot control and that cannot be spread to others. He told as much as he knew to tell and then took questions. The kids seemed genuinely interested in what he had to say. There were some questions, and then phillip ended with, "Okay, so, no more questions or staring. You now know all about what I have, so you can choose to accept it and be my friend or you can leave me alone." What a trooper!

One last thing to mention about Tourette's is that there is much more than just tics, as you can see in the chart. We constantly are dealing with Phillip's OCD (Obsessive Compulsive Disorder) issues - plus, there's the ADHD and moodiness side to it, too. One of our biggest hurdles right now is balancing medication. The problem is that most medications that help ADHD, OCD and mood can also increase his tics ten-fold. Talk about frustration!

So... the journey continues. We are still figuring out Phillip's medication. It seems we are always at the doctor's office. Some of these medications scare the crap out of me. His blood pressure went too low on one of them & he fainted. I thought he'd had a seizure! We just continue to pray for Phillip - and trust that God knows what he's doing!