|
 Teen
With Tourette Syndrome Learns to Cope
by Patty Sandoval Sralla, Daily Oakland Press, January 1,
2004
For more articles like this
visit
https://www.bridges4kids.org.
For more
information, contact the national Tourette Syndrome Association
at www.tsa-usa.org/ - or
for the local Web site, go to
http://ticwithit.tripod.com/. The local Tourette group meets
on at 7:30 p.m. the second Friday of each month at St. John's
Oakland in Madison Heights. Call Cheryl Stines, vice chairwoman
of support TSA-Michigan, at (248) 641-TSA5.
Every night, Olivia Rosquita dances.
The 15-year-old Roeper High School freshman can't help it. She
dances in her room until she's too tired to move. Then she knows
she can finally sleep and stop compulsively thinking about her
day, her clothes, her food, her friends. Random thoughts
constantly flood her mind, keeping her from being "normal," from
being herself.
For too long, Olivia and her mother, Lisa Clemons of Ferndale,
have been living with the effects of Tourette Syndrome.
The inherited neurological disorder - characterized generally by
nonvoluntary motor movements, verbal tics and obsessive behavior
- is caused by the unrestrained discharge of dopamine to the
brain. Dopamine is the chemical in the body that signals the
brain to move the body.
"Admitting that I have this, Tourette's, that's the hardest
thing," says Olivia, a delicate beauty with waif-like features.
But large dark circles under her eyes give away some of her
secrets.
It took a long time to diagnose Olivia.
Consequently, the gifted teen is all too familiar with the
language of psychiatrists. She says she's been described as
"oppositional," and diagnosed with attention deficit
hyperactivity disorder. She's been on psychotropic drugs for
most of her life. The latest was Strattera, which is being
touted as the new miracle drug for children with attention
deficit disorders. For Olivia, it was just another med to take.
This is just the latest in development in her tumultuous life,
which was challenging from the very beginning, her mother says.
"She was a very intense infant," Clemons says, sitting next to
her daughter during an interview in the downtown Royal Oak
Starbucks. "Very colicky; she never took naps. She had a lot
more energy than most babies."
Clemons says Olivia started to obsess about her shoelaces when
she was 3 or 4 years old. She obsessively would stack her shoes
neatly, something her mother dismissed as a quirky habit.
Then her daughter's behavior changed from obsessive to outbursts
called "rage attacks." These episodes would last anywhere from
45 minutes to an hour, and Clemons, a single working mother, was
pressured by her daughter's school, family and friends to
discipline Olivia.
"People think you can't control your kids," Clemons says.
"I thought it was all me. I was a single parent and I thought
that somehow I was messing up."
So Clemons took her daughter to therapy. In addition to the
rages, Olivia also had tics that included constantly clearing
her throat. Clemons says they went through 10 therapists until
Olivia was about 11.
"They really thought it was a parenting issue," Clemons says.
Her daughter continued to get worse. They put her on
anti-depressant medication, which brought on another tic,
constant eye-blinking.
Need for answers
Exasperated, Clemons went online and started to investigate her
daughter's symptoms on her own. She did a diagnostic test online
- and the results suggested Olivia might have Tourette Syndrome.
"I read all the symptoms of Tourette's," she says, "and I said,
'That's it.' I took the results to her therapist and highlighted
all her symptoms. He didn't think it was right, but then he
finally agreed."
Clemons called the Tourette Syndrome Association and got the
number of a local neurologist, who immediately diagnosed Olivia
with Tourette.
"I was so relieved," she says. "I knew there was something else,
something more. I think it was good for her to hear it, as
well."
After all the years of annoyed teachers, frustrating therapy
sessions and failures in school, Olivia finally was able to move
forward. But not without some significant road bumps.
Though the medication prescribed by her neurologist helped with
her attention deficit, she still had problems with school work
and with her obsessive behavior. Her work had suffered in
elementary school as a result of her problems, and she failed
seventh grade.
"I wasn't slacking," Olivia says. "I just couldn't do it."
Clemons says Olivia gave up that year.
"She cared, but really felt hopeless," she says.
Dangerous behavior
Added to the school troubles was her obsessive calorie
counting. The pressures of growing up and becoming a young woman
combined in a traumatic way with the obsessive-compulsive
dimension of her disorder. She became an anorexic and began
throwing up.
"I used to drink pop all day and I lost a lot of weight," Olivia
says, adding she went from 110 pounds to what she weighs now, 96
pounds.
She says a year before, she was even skinnier. "I would just
chew a bite of food and think, 'How many times can I chew this?'
I wanted to be perfect."
Now the teen is in counseling and belongs to a Web community
where she talks about her eating disorder.
"I don't mind the way I look now," she says.
Olivia's behavior is part of a spectrum of neurological
disorders that include obsessive-compulsive disorder, attention
deficit disorder and Tourette, says Barb Schmatz, vice
chairwoman of education for the Michigan Tourette Syndrome
Association-Michigan. People can have one of these disorders or
a combination, which can make diagnoses difficult. Also, since
Tourette is hereditary, extended families can manifest a variety
of symptoms.
Schmatz, her husband and three of her children have been
diagnosed with attention deficit disorder. Two of her children
have Tourette.
The Madison Heights mother got involved with the support group
after her second child, Dan, started blinking his eyes and
humming when he was 8. Schmatz and her husband saw a "20/20"
episode about Tourette and asked their pediatrician about it.
They were referred to Dr. Gary Trock, a pediatric neurologists
at William Beaumont Hospital.
How to help
Dan, who is now 21, is medication free and calms his
Tourette symptoms by playing the drums, Schmatz says.
"That's one
thing parents need to do," she explains. "They can help their
child find something that they're good at and help them develop
their skills. This will help them feel better about themselves
and it can also calm them."
The worst thing
parents can do is demand that their children "stop" ticking.
Also, Schmatz says parents should not allow their children to
blame all their troubles on the Tourette.
"Don't let them use it as a crutch," she says. "Even though they
have more obstacles than most kids, it's not an excuse for
inappropriate behavior."
Schmatz, who has been involved with the support group for about
12 years, says support is critical for parents struggling to
advocate for a Tourette child in the schools and in the
community.
Even though the need is great for outreach and education, with
some 700 people on the group's mailing list, the support group
has fallen on hard times. Two other support groups in different
parts of the state have folded, leaving the metro-Detroit area
to answer calls from school districts and distraught parents
from all over the state.
Even so, Schmatz says they do the best they can to provide
referrals and, at the very least, an understanding ear.
"It's just such a relief to find out that you're not alone and
that there are other people dealing with these same issues," she
says.
Though there are plenty of adults with Tourette, the illness is
particularly difficult for children, who yearn for acceptance
among their peers.
Though the road has been long, Clemons and her daughter look
forward to brighter days.
Olivia, who is in ninth grade now, plays sports and is doing
better in school with a 3.3 GPA. She's doing better physically,
too, and the teenager looks forward to her adult life. She says
she either wants to be a backup dancer or a journalist.
When asked what she would like people to know about Tourette
Syndrome, Olivia says: "It's not a mental illness.
"It's been a challenge, but I don't swear and I don't jump over
sidewalks or lick sweaters. I'm just normal - for me."
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