Battle with tics was rough, but daughter now is succeeding in college

Posted on November 18, 2011 by JasminM

I am unsure exactly when the TS actually started. From the time my daughter was about 2 years old, she began to experience what at the time was believed to be allergies and asthma; therefore, she was treated with medication for these ailments for a few years.

As time passed, I started to notice that she would move her shoulder blades in a manner that would make a loud noise. When I mentioned it to her pediatrician, the doctor told me that my daughter was actually taking her shoulder blades out of her socket. I was amazed that my child could do such a thing.

The doctor told her not to make it a habit of doing this, as with time it would damage the socket and by the time she was in her 20s it would become very painful. At this time, she also had what I know now was a tic. She would constantly throw kisses to me, and at first I thought it was adorable, but after a few months it began to get annoying and I would ask her to please stop. Around this same time, she began the eye blinking and the pediatrician mentioned that this was probably a nervous tic so I should just ignore it.

When my daughter was about 7 years old, I decided to take her to a psychologist because we were having some difficulties. This psychologist was a blessing. I would say in the second visit or so she said to me that she wanted us to see a pediatric neurologist which she was familiar with because she thought my daughter had TS from the mild symptoms she noticed in her.

During our visit with the neurologist, she asked many questions and then gave me a questionnaire to give to the teachers and one for myself, but she did say she was almost certain my daughter had TS. It’s important to mention that this doctor was familiar with this syndrome, as she had previous patients with TS. Never in my wildest dreams could I have imagined that this would be the beginning of what I still refer to as a roller-coaster ride. Continue reading →

‘Ben’ proves Tourette is more than just Tourette … it’s the other conditions, too

Posted on November 11, 2011 by LynnW

Our journey with TS started when Ben was very young. I’m not sure that I can give an accurate account of his TS without explaining the other conditions that seem to be part and parcel of his TS.

It is sometimes hard to sort out what category a particular behavior belongs to. In the end, it really doesn’t matter. What I want for Ben (not his real name) is for him to understand and accept who he is, to feel happy and confidant, and know that he can achieve whatever he sets his mind to.

Always a mover and never a sitter, we enjoyed Ben’s playfulness and sense of humor, even as a toddler. He didn’t seem to be able to rein himself in, though, and he spent many a minute in the time-out chair in the kitchen when I just didn’t know what else to do. Once he found out that an ordinary kitchen chair could be used as a jungle gym, he perfected the art of hanging upside down on it.

During his early years, I also had countless positive reinforcement charts for behavior modification, addressing one behavior at a time – brushing his teeth by himself within the third time of being asked, not interrupting his older sister each and every night as she was recounting her day at school so that we could avoid dual meltdowns at the dinner table, earning points for a set amount of TV time so that I could turn off the TV without having him throw a temper tantrum, and so on.

And at the end each day, when winding down was just not an option for Ben, a nice, long bath was always the answer.

In kindergarten, I noticed that he had some difficulty with his letters, and by first grade I pushed for him to have academic intervention in reading. His first-grade teacher was a gem – she would put Ben in the hall and ask him to run 10 of his fastest laps. When Ben would return to class, she would ask him if he was now ready to start math. She modified his work so that he felt success, and he progressed nicely. But yes, still a “bit” wild.

So I brought him to a developmental pediatrician who diagnosed him with ADHD, and we got a 504 plan for him. My husband and I did not want Ben to be thought of as a “bad” kid – he had impulses that he couldn’t control and we wanted the school to recognize that. Continue reading →

Jersey Shore mom details 5 years of raising a son with TS

Posted on November 7, 2011 by LauraD

In January 2006, after my son turned 4 years old (and a few days after his great grandfather passed away), he started shrugging his shoulders with a head twitch – like the collar of his shirt was bothering him. This went on for a couple days. Then he started flipping his head backwards quite hard. It didn’t seem to bother him, but we knew ”that wasn’t right.”

We took him to a pediatric neurologist, who diagnosed him with tics. We chose not to medicate, as symptoms were “not that bad.” In 2007 (almost age 6 — kindergarten), when his vocal tics started to be bothersome in school, we visited the doctor again and he was then diagnosed with T.S. with ADHD.

Although, I “really” didn’t want to, I opted to try medication this time, as it was disturbing the class. We started with a low dose of Tennex. After it seemed to slow him down for about a week, it then seemed to feel like it wasn’t working anymore, so with the doctor we would increase the meds.

After about 2 months on meds. my son punched a female classmate in the stomach as well as a female cousin when visiting one day. He never hit anyone before, and I knew I had to stop the medicine. We never medicated since.

We also brought our son to a doctor in New York City in 2009 just to see what he had to say — they would never treat a child his age (8 years) with such mild tics. Continue reading →