I'm starting a support group this month for parents of Tourette kids. I've been trying to get it going for about 6 mo and I'm finally there! We will meet for 1 hr once a month at our church. My son was diagnosed a little over a year ago and I've learned so much in the past year. For me, this step seems to be so important to me in my own "healing." The fact that I can maybe help someone not have to endure all the difficulties I went through trying ot figure out things on my own last year seems to be very theraputic to me. I think it's probably similar to how moms get involved in MADD. I know my son didn't die, I can't even imagine that, but in many ways the pain of the diagnosis felt very much like a "death sentence." Don't know if that makes any sense, but I think it means I'm finally at the activism stage of my grieving. Anyhow, we'll see how it goes!

By Gammiejoan on Thursday, January 15, 2004 - 09:23 pm:

Good for you, Laura. What size city do you live in? The reason I am asking is because I am wondering about the incidence of Tourettes in the general population. How many people will be attending your meetings, or do you have any idea yet? I used to think that Tourettes was very rare, but I am wondering now if it is more common than I had thought. Also is it difficult to diagnose in young children?

By Lauram on Friday, January 16, 2004 - 05:39 pm:

It is more common than you would think and VERY underdiagnosed. It depends on who you talk to about the incidence in the general population. So far I know of at least four parents who are coming for sure. Our town has about 25,000. There are three other support groups in our state. It's difficult to diagnose- only because drs don't understand it themselves. The average number of drs to visit before a diagnosis is seven. We were lucky- we saw four! The first three told me it was my parenting. Lovely! That's a pretty common scenario. Once you know what it is, it is pretty easy to recognize. I read another statistic that 80% of parents self-diagnose their kids before finally getting the official diagnosis. Meaning- they know something is wrong- the drs don't get it- and eventually they figure it out on their own. We went to a fundraiser last year for the CT TOurette's syndrome association at a roller skating rink. IT was packed! I was so surprised to see how many people either had it themselves or knew people who had it. It was truly amazing! ANyhow, if you want further info, just let me know. BTW- my son's best friend was just diagnosed. How weird is that?!

By Gammiejoan on Friday, January 16, 2004 - 10:20 pm:

This is very interesting, Laura. Am I to assume that Tourettes is underdiagnosed because doctors just don't recognize the associated symptoms and/or behaviors? If there is misdiagnosis, what are the most common diagnoses made? Also are there any particular sites that you can refer me to to learn more about this disorder?

By Trina~moderator on Saturday, January 17, 2004 - 02:20 pm:

GOOD for you, Laura! Let us know how things work out.

By Lauram on Saturday, January 17, 2004 - 04:02 pm:

Here's a great place to start, but there are many others as well. http://www.tsa-usa.org/ The most common "diagnosis" I know of is poor parenting! THat's what we heard over and over again- from school and drs. Let me tell you, that is NOT this kid's problem! He should only be so lucky! Here is a paste from the site: 1. Q. What is Tourette Syndrome?

A. Tourette Syndrome (TS) is a neurological disorder
characterized by tics -- involuntary, rapid, sudden movements or vocalizations that occur repeatedly in the same way. The symptoms include:
Both multiple motor and one or more vocal tics present at some time during the illness although not necessarily simultaneously;
The occurrence of tics many times a day (usually in
bouts) nearly every day or intermittently throughout a
span of more than one year; and
Periodic changes in the number, frequency, type and
location of the tics, and waxing and waning of their severity. Symptoms can sometimes disappear for
weeks or months at a time.
Onset before the age of 18