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.
I had no idea what TS was. I had heard of nervous tics but to me that was just that a nervous tic, blinking too much or scrunching your nose. I went home and began my research into what was TS. Wow, I felt like my world had been turned upside down. I felt like I just lost everything that I envisioned for my child. I mourned the life that I thought we were going to have, the child that I thought I was going to raise and then the guilt set in.
I felt guilty because I now knew that she had no control over the countless kisses she blew at me for almost a year and I many times became frustrated with her. I felt guilty because I did not know sooner. So I had a conversation with my at that time 8-year-old and apologized for asking her so many times to stop doing something she did not know why she was doing but could not stop.
The neurologist at that time did not feel the need for medication as the symptoms were very mild; however, about a year later she put her on Tennex because the tics were becoming more prominent. For about two years everything was fine. Things were actually so great that I even began to think that maybe she did not have TS.
I soon had a rude awakening when she turned 10 years old. She began a head tic in which she would jerk her head back. The tic was so intense it appeared as if someone was shacking her with so much force. This had to be one of our most trying times. This would be the only time in her life that she cried to me and said she did not want to have TS. My heart has never ached so much.
At this time, is when the trial and error with medications began. We went from one med to another, from one combination to another until finally we found what kept her somewhat stable, but make no mistake — the tics are present almost every day in one form or another.
She has vocal tics, shoulder shrugging, eye blinking, arm thrusting; she kicks her legs up backwards to hit her buttocks; she has finger ticks, in which she needs to bend them and then stretch them out; and a few others which I can’t think of at the moment.
My daughter is now 18 years old and just began this September her first year in college. She is an artist and decided this would be her major, she is extremely intelligent and she is loving, caring, and yes, she has her not so nice moments just like any other teenager.
I mentioned earlier that I went through a mourning period when I learned what TS really entailed but it turns out what I can envision now for her future is even greater than what I had envisioned back then.
It is great to hear some stories about some of the older children and how they are doing. I have an elementary school daughter and yes your heart goes out to them during their struggles and you constantly wish for them to ease. My daughter also has a great gift with Art, and Music and I can see her being an Art teacher someday. Keep us posted!
I love the positive tone of the article. Like I have come to believe, maybe because I have to, but it’s not the diagnosis that we should focus on, but the prognosis. And the prognosis for most TS kids is good. It sounds like that is the case for your daughter. Congratulations to her and to you too.
I do have a question about her current symptomology…..what are her tics like now? Is she still on any meds?
Kevin, Jasmin has prepared a well-thought-out response to you, and we’ll be posting it later this week as one of our featured content!