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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."
ASSISTANT EDITOR: Ben Hohman, 14.
REPORTER: Perri McKinley, 13. |
