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Article of Interest - Tourette Syndrome

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Bridges4Kids LogoTeen With Tourette Syndrome Learns to Cope
by Patty Sandoval Sralla, Daily Oakland Press, January 1, 2004
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For more information, contact the national Tourette Syndrome Association at - or for the local Web site, go to 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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