About my Charity

I have chosen TSA as my charity of choice for my eBay Store. For any of my listings that have the Giving Works icon, I will donate a percentage of the proceeds to this charity. TSA stands for Tourette Syndrome Association. Their purpose is to provide support, research funding, and public awareness for people with Tourette Syndrome.

What is Tourette Syndrome?

Tourette Syndrome is a neurological disorder characterized by motor or verbal tics. A tic is a repetitive muscle twitch , movement , or verbal utterance. It’s like having your car turned on but your wipers & horn keep going on & off even though you are not activating them. Examples of common TS tics are eye blinking, head jerking, shoulder shrugging, neck turning, grunting, continual clearing of the throat. Different tics come & go, and vary widely in frequency & severity. Stress is not a cause, but it certainly increases them. The one symptom that gets unfairly portrayed in the media is copralalia (swearing or negative phrases) This occurs in a very small percentage of cases. It is quite common for a person with TS to also have one or several of the following: Attention Deficit Disorder (ADD or ADHD) with or without Hyperactivity, Obsessive Complusive Disorder (OCD), General Anxiety Disorder (GAD).

How TS has touched our life

Our son Christopher was diagnosed with TS at the age of 8. He is now 19 y/o and we are very proud of him. He is currently a freshman @ University of Illinois Urbana Champaign (Chem Engineering major)

The earliest symptoms my wife & I can remember were bouts of throat clearing & eye blinking. We thought he had allergies & didn’t think much about it. At the age of maybe 7 or 8 he began to repetitively turn his neck. This lasted for many months and I remember talking to him, scolding him, bribing him, and pleading with him to please stop “doing your neck thing” (of course the poor little guy couldn’t!). We finally took him to the pediatrician, who mentioned that it was probably a tic and he mentioned the word “Tourette” for the first time. He suggested we see a neurologist.

Our first neurologist diagnosed Tourette Syndrome based on the symptoms we described (there is no test to diagnose it): throat clearing, eyes blinking, neck stretching. I personally took the diagnosis very hard. I remember actually apologizing to the little guy and said I was sorry for scolding him about his neck. He hugged me & did what any 8 y/o would do; he immediately forgave his incredibly stupid father!

Over the next few years, he went through bouts of many different tics. It seems as if he always had one dominant tic mixed in with a few minor ones. At the age of 11, Chris was put on one low-dose medication to lower his tic frequency & severity. As he grew, his dose increased proportionally. The medication caused him to gain weight. It did not dull his senses though, as we kept the dose low enough. His worst ticcing was between the ages of 11 through 15 or 16 years old.

We began to wean Chris off his tic meds when he was 16, as his ticcing began to decrease. He stopped tic medication completely in the summer of ’07. He remains off tic medication. His tics are subtler now, and if you met him you may not notice them. He does use low-dose ADD medication on an “as needed” basis for some school days.

Advice

In summary, I’d like to give some advice to parents who have a newly diagnosed TS child, based on OUR experience:

• Take the TS day by day. DO NOT EXTRAPOLATE A BAD TS DAY AND THINK THE REST OF YOUR CHILD’S LIFE WILL BE THIS WAY
• Find a neurologist that is on the same page as you. I remember going to a second neurologist due to insurance change. He asked Chris ~ 3 questions and immediately wrote Chris a Risperdal Rx. We never filled it. We then found a pediatric neurologist who generally cared about Chris, proceeded to get Chris’s entire story, always made decisions based on all of our inputs, and we feel blessed to have found her.
• Don’t be afraid to medicate, as long as it’s under a neurologist’s care.
• Seek counseling for yourself if you need it. I personally needed to talk a few things through, as I was extremely frustrated that I could not help him. 
• Join TSA or the TSA of your state (if it has one). There’s a lot of information out there.

 

Finally, If you have purchased one of my TSA listings, my entire family would like to thank you!