Sounds like an awful lot for a kid to be stuck with, huh? But, it is not the worst thing in the world to have. Who else gets to snort like a pig during a movie, and get away with it? ;) I hope you have a few moments to sit back, and read my story. I hope you learn from it what it is like for a kid to have TS. I also want you to come away with the knowlege that while I am different, I have the same interests as any other 8 year old kid.
I was diagnosed with TS when I was six years old. My mom and dad had noticed that I was doing some pretty strange things. I was blinking my eyes a lot, shaking my head, and smelling my hands about two or three times a minute(sometimes more!!) I couldn't sit still, and flitted from one activity to the other. I still have a lot of energy! So, my mom did some investigating, and she started on the net. She soon came to the realization that I may have TS. So, she set up an appointment with my pediatrician.
To prepare for my visit, Mom kept a journal of my odd behavior. She also printed out lists of symptoms, and highlighted the behavior that I exhibited. Finally, it was time to see the Pediatrician. He was impressed that my mom had done her homework, and concurred that it indeed sounded as if I might have TS. He kept a copy of the information my mom showed him for my records, and he referred me to a psychologist. (My mom had actually taken me to the DR when I was four, to see about me being hyper, but nothing came of the visit. In hindsight, we now know what was going on!)
Finally, we got in to see the psychologist. She gave me a lot of tests. The plan was to take it step by step and try to rule out my disorders, starting with AD/HD. Instead of ruling ad/hd out, however, I was diagnosed with it! She also gave me an IQ test, and I found out that I am pretty darn smart for my age. I started reading at age 2, and in my mom's relentless search for information, she discovered that there is a little known disorder called hyperlexia, (that means accelerated reading). Interesting, huh? Anyway, my psychologist then referred me to my neurologist. After another wait, I got to see him. He officially gave me my diagnosis in November, of 1997. I was put on the medicine Tenex, at a dosage of 1 mg. per day. Now, I take 2 mgs per day, half a pill before school, half a pill after school and one pill an hour before bed, as one of the side effects of tenex is drowsiness.
So far, I haven't had many problems in school. My teacher has been very supportive. I don't normally tic at school, I usually save it all up for home, where I know I can get them all out, and not be made fun of.I have had many tics. They come and they go, and there are short periods where you would not even know I had TS. But, like I said, these periods are short. The tics I have had,( and I may be forgetting some!)
Motor Tics:
And My List Of Vocal Tics:
Sometimes, kids ask me why I am shaking my head. I just tell them it is because I have TS. No one has really made fun of me, and if they do, I will just tell them about TS, and hope they understand.
I also have a disorder called OCD. Now, this is one of the reasons my mom thought something was going on with me! OCD is obsessive compulsive disorder, and there have been several things that I have been obsessed with. The first obsession I had was hand smelling, I would smell my hands all the time. When I touched something, when I used the bathroom, when I ate, when I washed, I HAD to smell my hands. Sometimes, my mom would smell them too, and we would both laugh. I have to say, it seemed weird to others, but most of the time, I was unaware I was even smelling my hands at all.
I began to have to smell other things also. I even had to smell my mom! I still have to smell things. Crayons, clay, dollars, leaves, toys, my brother, clothes, you name it, I smell it!
Another obsession I went through was pencils. I hoarded them. One day I bought ten pencils at school. My friends gave them to me, because they knew how much I liked them. I would bring them home and hoard them. I have over a hundred pencils. Also, if my little brother got one, boy, would I flip out! I still like pencils, but am not as obsessed now. Just like my TS symptoms, OCD comes and goes. Right now, my OCD shows itself through my extreme fear of storms. If the weather is bad, I am glued to the TV, watching for the weather. I know the doppler system as well as any meteorologist! I am especially fearful of tornados, and the mere mention of the word causes me anxiety.
Another aspect of my TS is tactile sensitivity. HUH?? What is that, you say? Well, it is like this. I put on my socks, and they have to be lined up perfect on my toes, or I go bonkers. The line bothers me very much. My shirts have to have the tags cut out, or the tag will drive me up the wall. It is the rubbing of the tag that irritates me. My clothes have to be just so, or I won't wear them. Makes for some FUN mornings!!
I have AD/HD, and tons of energy. I tried a medicine for ad/hd called adderall, but I only took it for a month, as it made my ticcing worse.I was on Prozac one time for my OCD, but boy, did it make me a goofball! I was giggly and goofy and my mom took me off of it. She said she would rather me smell everything in the house and sleep on a bed of pencils than to have me wandering around in this Happy Happy Joy Joy state of prozac induced giddiness one more DAY!
One part of TS that is hard for my mom and dad to deal with, and me too, is my rages. I can go into rages for almost no reason at all. I wish that I did not have them, because they are so frustrating to deal with. But, my parents love me and I know that they know I am trying my best to deal with it. Even when we all get frustrated over my outbursts, we make up. My parents never make me feel unloved because of the TS.
Well, I have told you the things that make me different. Here is what makes me the same as any 8 year old kid out there. I love to play soccer, and am just getting into football. I can throw a mean spiral! I love N64--Mario Party is one of my new favorite games. I am into Star Wars, I can't wait until Phantom Menace opens! I love wrestling on TV, and have almost all of the figures, including Goldberg, Hogan, Sting and DDP. Just this past month, I learned to ride my bike with no training wheels! I have a lot of friends, and I go to Catholic church. I am mean to my brother one minute, and hugging him the next. I can't wait for summer break, and I am going to miss my teacher. I love to read, and I love to draw stories of army men and battles, and wrestling scenes. I love play-do, and clay, and coloring and PeeWee's Playhouse, and Garfield. Pretty much a lot of stuff other 8 year olds enjoy too, huh?
Thanks for taking the time to read my story. Maybe you see some things your kid is doing, and frustrating you by doing them, and now you think, hey, maybe it's TS. I hope you have learned from my story. I would love to talk with any other kids with TS, or if you just want to drop me a line and tell me what you thought of my page, email me, or sign my guestbook. I love to get email too, and use the computer, did I mention that?
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