Thursday, May 18, 2006

If you were Tourette Syndrome, what would you look like?

In response to the previous comments, I thought I would let you know how TS has played out in our home. I've discovered amazing similarities among other TS kids, but also some major differences. This is our story.

Our oldest daughter was a high needs baby. Lots of crying. Lots of reflux. The reflux seemed to return when she was about five years old. That's when the doctor tried Zantac before doing any type of scoping. It did the trick anytime her stomach was acting up. She learned to tell us when she needed her "tummy medicine." She was always a very (VERY!) sensitive child. She had a heart the size of Texas, but it would keep her up half the night worrying about the abandoned baby girls in China. She took the world on her shoulders.

We noticed the tics when she first started to read in late Kindergarten. We would be sitting with her, quietly listening, and she would make this humming noise ... over and over and over. It was like a metronome. Her father and I made all of the typical mistakes. We pointed them out to her. Would say things like, "Honey, you're making your noises again." Dumb-da-dumb-DUMB! But we wizened up soon enough.

The facial tics started that year, too: shoulder shrugging, blinking. It took awhile to realize they were all a part of one big puzzle. Many times it just looked like her eyes were dry or she had an itch on her neck. I am an information junkie, so I read up on tics. I remembered my nervous tics I had as a child. I knew that no doctor would consider it TS unless it had been going on more than a year. So, we waited.

Even after that year mark came and went, we still waited. It didn't seem to bother her (even though it did occasionally make us bonkers). No one else was really noticing, and there just wasn't a reason for a diagnosis or medication. We started talking with her about it (because SHE was noticing). We watched the day that Oprah highlighted kids with TS, and the new HBO special, "I Have Tourette's But Tourette's Doesn't Have Me." She understood her disorder, but still wasn't bothered ... until ...

One Sunday her choir sang in church. She was afraid she would forget some of the words. She got herself so worked up that she tic'd all the way through the songs. Her chin was jutting out, she was blinking, shrugging her shoulders and shaking her head. Her movements are relatively small, so some people still didn't catch on (they were too busy video taping their own kids! ha!). However, a teenager came up afterwards and asked her why she was moving her head so much. My daughter gave a beautiful and eloquent explanation about tics. When we got home, she explained the conversation to me. I complimented her on how she handled herself. That's when she began to cry. She knew what to say, but she didn't want to have to say it. She told me that she was ready to see a doctor that could "fix her tics."

We went to the neurologist. We tried a mild medication that did nothing for the tics, but for the first time she was able to fall asleep at night. Her anxiety and depression levels started to escalate. It was obviously affecting her ability to live normally. I called the neurologist, whose nurse was very encouraging as she explained that Tourette Syndrome rarely shows up alone. Many kids with TS also battle depression, anxiety, ADD, ADHD, OCD, and other things. The thought of adding more meds was very overwhelming for me, but I realized that if the meds didn't help - we could just stop using them! So, we took in our next prescription and two weeks later our daughter could go do something exciting without becoming physically and emotionally sick with anticipation.

At this point, we have decided to not add a third medication that would be something stronger to suppress the tics. What we discovered (for our daughter) is that once her depression and anxiety level decreased, she is much more comfortable with her disorder. She's almost proud of it! :) We spent all day yesterday making bracelets for TS Awareness Month.

That may change one day. We let her lead the way. Tourette Syndrome symptoms can come and go and change throughout the years. Many children have all of their tics diminish after adolescence. Some kids have problems with handwriting and schoolwork (we deal with that, too!). It just depends on the child!

So, that's our family snapshot. I hope it gives you a better insight into what TS can be.

Here are some other stories:

Personal Insight Into A Misunderstood Disorder

It's No Joke To The Kids Who Have It

LT’s Tics

A Day At Our House: Life With Tourette Syndrome

5 comments:

Jenn said...

Thanks so much for sharing all that so we can get a better picture of what TS is all about.

Amy T. S. said...

Me, again. I remembered that I have a student in one of my classes who has TS. His tics are blinking and some facial twitching. He's adorable, and one of my faves. He drew me a picture of a bee and said, "When you are here everything bee better."

Anyhow, party on, Garth.

Angel said...

Thanks for linking to my blog! Also thanks to you and your daughter for sharing your story!

Overwhelmed! said...

Thanks for sharing your family story. I had no idea what TS was all about, now I do. Thank you!

chelle said...

Your daughter is amazing!! How wonderful that she has grown to have so much confidence in herself! I can only hope to instill that in my daughter!! Thanks for sharing!

(you stopped by my blog many moons ago and somehow I lost you...now I have found you again and read this and made so happy I did!)