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 Article of Interest - Tourette Syndrome

Disorder Often Misunderstood, Youths Say
Many don't realize Tourette Syndrome leads to loss of control, according to children.
by Hunter McDowell, 17, Andy Goldblatt, 14, and Jennifer Maberto, 14, Y_Press, April 20, 2003
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Everyone has quirks. You might pop your knuckles, bite your lip or twirl your hair. These habits might be hard to break, but it's not impossible.

Unless you have Tourette syndrome.

Although the condition is hard to diagnose, about one in 2,000 children have Tourette syndrome, a neurological disorder characterized by repeated involuntary movements and uncontrollable vocalizations known as tics. Tourette patients have one or more vocal tics and multiple motor tics, which might include eye blinking, head nodding, arm thrusting, throat clearing and shoulder shrugging.

At times, the person may control the tics, but this often only postpones them, leading to more severe outbursts later.

"Sometimes I can (hold) it if I really have to, but then I can't after a while," said 12-year-old Tourette patient Amy Land.

The syndrome is often misrepresented in Hollywood, with characters that have nonstop cursing problems. These rare outbursts, called coprolalia, occur in about 30 percent of severe Tourette cases.

Laurence Walsh, assistant professor and doctor of pediatric neurology at the Indiana University School of Medicine, said the syndrome's origin is unknown.

"That's a Nobel Prize-winning question. I think it's mostly genetic, if not all genetic. More often than not, when you see a child with Tourette syndrome, you'll see family members that either had tics or you may see them have some other things, like compulsive disorder," said Walsh, who has Tourette syndrome himself.

It is closely related to attention-deficit disorder, hyperactivity, obsessive-compulsive disorder and other difficulties with impulse control. Often parents of Tourette patients realize that they, too, have similar symptoms.

"When a family comes in and the child has Tourette syndrome, we start asking, 'Does anybody in the family have tics?' And they say, 'No, no,' but you can kind of see one of the parents actually having tics," said Walsh. "And the next time, they say, 'You know, so-and-so has tics,' and it all kind of comes together for the family."

Many kids are diagnosed at a young age, but they often do not fully understand their condition until they are older. Amy was 6 years old when her parents realized she might have a problem.

"I coughed a lot, and it wasn't like a cold or anything. It was all the time, constantly coughing very hard, and like my eyes twitched and stuff. . . . At first they thought maybe I had asthma or something, but after a gazillion doctors, we finally found out what it was," she said.

Brandon Loudermilk, 10, also started showing symptoms at age 6 -- he flapped his arms and jerked his head and couldn't stop.

"My parents didn't really know about (Tourette syndrome) but then after a while they saw that I was doing it."

But unlike the Lands and Loudermilks, some parents often deny their child might have the disorder. They may become frustrated and try to stop the suffering child from repeating the tics.

"Sometimes they just don't understand why you can't make it stop, why you can't just give them a medicine and make it all go away. Intellectually, the person understands, but emotionally they just want it to stop," said Walsh.

Tics are worse for patients ages 10 to 12. Sometimes they can be painful because of the movement's repetition and jerkiness.

"Certain ones hurt muscles," Amy explained. The tics often become stable during the teenage years and by the age of 20, they become less noticeable.

Physicians may prescribe medications for the syndrome, according to Walsh. Prozac and Paxil don't do much for tics but can help with compulsive behaviors. Older blood-pressure drugs such as Clonidine may help tics, as can older medications used to treat schizophrenia, such as Haldol, although those have many side effects.

Brandon takes no medication; Amy does.

"It's a patch that you stick on your arm and it really helps me. I still (have tics), but it helps them not get as bad as they could if I wasn't on the medicine," she said.

Children with the disorder can still live normal lives. They can play sports, go to camps, attend school, make friends and engage in other activities, although some can trigger tics: "I can't play the piano or anything 'cause it makes it worse," Amy explained.

In lower grades, at least, ridicule is common.

"When I did go to school, . . . my best friend became my worse enemy. She'd make fun of me," said Amy, who has been home-schooled since first grade.

"Sometimes I cough so hard I can't cover my mouth, 'cause I'm not, like, expecting it, and they get mad 'cause I can't cover my mouth. They're just like, 'Stop!' "

"Some kids will say, 'Why are you doing that?' or some of them will say, 'Stop. It's kind of bothering me.' But most kids don't even say anything," said Brandon.

Walsh has some advice for these children.

"You don't have to stand up in the middle of class on the first day of school and say, 'Hi, everybody. I have Tourette syndrome.' But, say, people ask you, 'Why do you do that?' you can explain it," he said. "There are still going to be people who tease you, but your friends and family won't at that point."

Teachers can be a source of misunderstanding, too. Many punish Tourette patients because they don't understand the actions are uncontrollable. The Tourette Syndrome Association offers pamphlets and videos for teachers to help them deal with classroom situations. Walsh suggests that teachers give those students extra time and recognize he or she isn't doing it on purpose.

"It would help if people understood that we can't help it, so they will stop getting mad at us," added Amy."


REPORTER: Perri McKinley, 13.

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