Tourette’s Syndrome(TS) is characterized by involuntary vocal and motor tics. It is estimated that as many as 200,000 Americans suffer from the most severe form of Tourette’s Syndrome, and as many as one in 100 display symptoms of milder cases. Facial grimacing, head jerks and twists, hopping, and jumping or bending are all examples of motor tics that may present with TS. Many people associate Tourette’s Syndrome with the uttering of inappropriate words or phrases, known as coprolalia, but this only occurs in about 10 to 15 percent of those with TS.
Symptoms are usually first noticed in childhood, between the ages of 3 and 9. It is almost three to four times more likely for males to have Tourette’s Syndrome than it is for females. Symptoms can last a lifetime, but typically tend to be the worst in the early teen years. So, what’s it like to have child with Tourette’s Syndrome?
My son is thirteen years old. He’s all boy. He loves getting dirty, playing sports, and the great outdoors. He was diagnosed with Tourette’s Syndrome when he was seven after we started noticing tics. If Ryan got very excited, they seemed to get worse, or even if he was very stressed or frustrated. I remember feeling very down after his diagnosis, but then I remembered that I was his mother and that it was up to me to help him overcome this hurdle.
Ryan gets in the car after football practice. The warm September air fills the car and I ask him how his afternoon was. He clears his throat a number of times and loudly snorts. He twists his head a few times and shrugs and his shoulders and tells me the details about practice. What he loved, hated, and everything in-between. He wants to stop for dinner and when I tell him I’ll be cooking that doesn’t go over well, and his frustration intensifies his symptoms.
When we get home, I tell Ryan to take a shower and that makes things a little worse too. When I get him calmed down, he is showered, dinner is served, and we all eat as a family. Ryan blinks a lot during dinner and tugs at his hair. His brothers are quite rambunctious tonight and a glass of water is spilled at the table. I blame that on boys, not Tourette’s Syndrome.
After dinner and homework, it’s time to get ready for bed. Bedtime is a struggle because most boys don’t see the need for a “bedtime.” It is my hope that Ryan can get some much-needed rest. When Ryan sleeps, his tics are usually gone. To me, I see it as his time to escape and recharge. While his Tourette’s Syndrome doesn’t define him, it is a major part of his life and our family life and we will certainly continue to stand up to the challenges it may present in the coming years.
If you’re seeking new treatment options for you or your child’s Tourette’s Syndrome, a new clinical study is enrolling now at Northwest Florida Clinical Research Group. Qualified participants receive care from board-certified physicians and close medical monitoring throughout the study. Study participants and their caregivers often learn valuable information about caring for their condition as well. Compensation is also provided for time and travel expenses.