It is clear that Tourette’s is inherited. My father has Tourette’s; my brother had Tourette’s. My husband has Tourette’s (undiagnosed), and my son has Tourette’s (diagnosed). Gee- you think there’s an inherited quality to it? Gee- you think that somehow I’m surrounded by men with Tourette’s?
But there’s two problems with declaring it to be an inherited syndrome:
- Tourette’s is so intertwined with:
- Bipolar disorder
- Obsessive compulsive disorder (OCD)
- Attention Deficit Disorder (ADHD)
- Oppositional Defiant Disorder (ODD)
- Generalized Anxiety Disorder- Not Otherwise Specified (GAD-NOS),
- Even dysgraphia, and a whole host of other initials, that it’s hard to separate out what is a Tourette’s tic, what is an autism tic, what is a vocal tic versus impulsive speech, what is a repetitive behavior versus a tic, and what is just little boy anxiety.
But the Tourette Syndrome Association International Consortium for Genetics (TSAICG- now that’s an acronym that rolls trippingly off the tongue) is trying to work on both issues. They have identified some potential chromosomes and need volunteers to contribute to a study they’re doing. A study that is sponsored by the National Institute of Health. A study that requires blood to analyze.A study that is very, very important. A study where I will never see the direct results for my child, but one that I know that can impact future medications, future therapy and future understanding of this… this… whatever this “Tourette’s” is.
See that number on the right hand side? One of those numbers is my son, I’m proud to say. And I’m most proud of why he agreed.
- Setting– In Ray’s bed as I’m reading to him at bedtime. Normally, a time when we can talk and he’s not so distracted by… everything.
- Me- Ray, there’s a study that wants to look at what causes Tourette’s! And you’re invited. They have my email in their systems and they emailed me today and invited you to participate (I didn’t tell him about the online survey I had already filled out that yup- found that he’s a candidate)
- Ray- Oh.
- Me- Yea. They need your permission to do it. It means getting your blood drawn, but they’re going to analyze your blood and look at the teeny tiny parts in your blood called DNA and learn all kinds of things about Tourette’s. Isn’t that cool?!
- Ray- NO WAY!
- Me- And they’re going to give you a $10 gift certificate to Target when you’re done! (It’s really $5, but in the name of science, we’ll contribute $5 ourselves)
- Ray- No. (Starting to shut down now)
- Me- You know, sweetie, these results aren’t going to help you. It’s going to take them a long time to find out the information they need to help people with Tourette’s. But it might help your child.
- Ray- I’m not having children. (Contrary kid)
- Me- Certainly that’s your choice. But the results might help Elizabeth’s children. Or even their children. Just imagine! Your blood could actually be part of a study that helps so many children. But they can’t take it without your permission. They already have my permission- but they have to have yours. You have to agree to it. And it’s ok if you don’t. I can see where this might be scary.
- Ray- no response- and he got down from the bed to get a drink of water.
End of conversation- or so I thought.
- Setting– early the next morning
- Elizabeth- HEY! How come Ray gets to get a Target gift card for some blood of his? I want a Target gift card!
I’m not sure if it was sibling rivalry, the opportunity to get money towards a DSi game at Target, or the opportunity to help his sister’s future children- but he talked to the researchers from Children’s Hospital in Boston and agreed to help. They’ve sent us the tubes for us to mail, and next week, his pediatrician will be drawing his blood to FedEx to Boston. He’s nervous. He’s more than a little anxious about it. But he knows that he’s helping.
I encourage anyone who has Tourette’s, who knows someone with Tourette’s, who finds this blog through Googling Tourette’s, to participate in this study.
Someday, you might help your sister’s children, too.