Straight talk about tic disorder called Tourette’s

When children hide symptoms, it adds to stress

Shelly Sanders Greer
special to the star

Lee Scriven’s youngest child was diagnosed with attention deficit disorder when he was 5. He was constantly clearing his throat and sniffing. Her daughter, who was entering Grade 9, started making mooing sounds and had trouble fitting in with girls her own age, while the middle child seemed to lick his fingers every fall when school started.

At 7, Debbie Christof’s daughter started holding her bowel movements, sniffing and felt compelled to touch hot burners. When he was 9, Michael Duquette had serious rages and became depressed.

After years of worry and countless trips to the doctor’s office, these children were diagnosed with Tourette Syndrome (TS), a misunderstood condition depicted in the media as the “swearing disease.” This stereotype has given Tourette’s a stigma, invoking shame on families with the syndrome, often leading to high doses of medication to try to still the tics and subsequently the personality, and hiding its very existence.

For people with Tourette’s, the tics are just a part of life, like migraines, diabetes and epilepsy, and there is no miracle cure.

Tourette Syndrome is a physical disorder of the brain that causes involuntary movements, like blinking, shrugging and eye rolling and involuntary vocalizations. Researchers believe tics are caused by an excess of the brain chemical dopamine. With these tics come associated problems like attention deficit hyperactivity disorder, which affects 50 per cent of kids with Tourette’s, and obsessive-compulsive disorder, which is more common in girls than boys. Other problems may include aggression, difficulties with impulse control and handwriting and other fine motor skills, low frustration and tolerance levels and an insensitivity to social cues- a powerful combination that calls for parental support, behaviour therapy and acceptance and understanding by teachers and peers.

“My biggest challenge was school,” says Jessica Scriven, now 19. Her voice is raspy from a vocal tic that led to a nodule on her vocal cords.

“Because I knew I was different, it was traumatizing. School is made for kids who fit in. I never hung out with girls my own age because I was immature. Because I also have ADHD, I couldn’t sit still and read. When it was quiet reading time, the noises I made from the TS were more apparent.”

When Lee Scriven began searching for help, she was disappointed by the lack of information about Tourette’s. She did, however, find solace in a support group and in meeting Dr. Duncan McKinlay, an ambassador of Tourette’s and a hero to many kids. As a child, McKinlay, who now works as a psychologist with the Toronto District School Board and maintains a Web site (www.lifesatwitch.com), started feeling urges to tic and would wash cars repeatedly, showing signs of obsessive-compulsive disorder.

“I really suppressed my tics,” McKinlay, 28, says of his ability to hide his disorder for years. He wasn’t diagnosed until he was 19. Living in a small town, it soon became apparent that he was “different”. McKinlay was ostracized and threw himself into his schoolwork, at which he excelled. High school was a battleground, he says, and dating was difficult because he “wore people out” with his intensity.

Dr. Paul Sandor, director of the Tourette Clinic, Toronto Western Hospital, treats six new cases a week, and has several hundred patients. He sees approximately five times more boys than girls with tics, but says if you include obsessive-compulsive disorder, boys and girls are even.

The prevalence of Tourette’s is common, he says, affecting 1 to 3 per cent of the population. “Swearing is not very common, and is found in just 5 to 10 per cent of people with TS. If you want to feel what it’s like to have TS, try to stop blinking for more than half a minute. This is very much what the patient would feel, a sense of holding back.”

Dr. Peter Ramshaw of the Shoniker Clinic estimates 18 per cent of kids have transient tics over their lifetime. “I see tics walking down the street, working in the hospital, but people don’t want to be diagnosed,” he says.

There are no figures on the number of people with Tourette’s, but doctors agree it is a difficult condition to diagnose. Kids often suppress tics during a visit to the doctor’s, or they can be mistaken for allergies or even bad behaviour.

Sandor would like to see more clinics across Ontario and is developing a curriculum and workshops to help doctors make accurate diagnoses. He and Ramshaw operate the province’s only hospital-based clinics that specialize in treating Tourette’s and its associated disorders. Doctors at Scarborough General Hospital and Royal Ottawa Hospital also take on Tourette’s patients.

For people outside Toronto and Ottawa, the only options are psychiatrists, who get involved if medication is needed, and psychologists, who can help with behaviour therapy and self-esteem. But psychologists are not covered by OHIP so they’re not accessible to people with low incomes.

Researchers worldwide have been working since the mid-1980s on treatments and possible causes for the disorder, including genetics.

At Yale University’s Child Study Center, where director of research Dr. James Leckman has published hundreds of papers on Tourette’s, they are investigating the syndrome’s relationship to prior infections such as streptococcal pharyngitis, looking for evidence that antibodies can cause tic-like movements.

Leckman is also looking at the effects of stress on tics. “There seems to be more effects from the stresses of everyday living rather than bigger, unusual stresses like a death in the family,” he says.

Ironically, Sandor says, some parents act as if this is a disaster, and tell their kids to hide it at all costs. This adds to the burden that can make tics worse.

To ensure kids with Tourette’s have a minimum of stress, it’s important that teachers and coaches understand this disorder and the child’s need for structure and routine, and recognize the varying skill levels.

“There is an uneven pattern in their skills,” says Sandor. “Many kids with TS are very verbal but have difficulty in translating their thoughts into written form. More time is also needed for exams, along with more tolerance for certain behaviours.

“One thing patients cannot handle is being confined. They also have a black and white view of morality- difficulty seeing the grays. If they think they’re right, they’ll challenge authority and act in a harsh manner. The principal or teacher needs to de-escalate the situation.”

The Tourette Syndrome Foundation of Canada runs information programs for schools to help students and teachers better understand the disorder.

For families with a child diagnosed with Tourette’s, the initial response might be to get rid of the tics with medication- although there is no specific medication for the disorder. But unless the tics are painful or acutely embarrassing, many doctors agree they should not be medicated. Sandor’s and Ramshaw’s clinics use behavioural therapy and offer support groups for kids and parents.

“I advise people if tics are mild and don’t attract attention, leave them alone,” says Sandor. “If there is a problem with peers at school, it’s often beneficial to have someone come and talk about TS.”

Burying your head in the sand is the worst thing you can do if you think your child has Tourette’s. Ramshaw says his practice has shown that the kids he treats early become productive adults.

“Take care of it, just like you would take care of buck teeth,” he advises.

For more information, contact the Tourette Syndrome Foundation of Canada, 1-800-361-3120 or 416-861-8398.

Shelly Sanders Greer is a freelance writer with three children and has Tourette Syndrome in her family.

Category: Science and Technology
Uniform subject(s): Diseases, therapy and prevention
Edition: Ontario
Lenght: Long, 1039 words

Copyright (c) 2002 Toronto Star, All Rights Reserved.

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About Shelly Sanders

Shelly (represented by Amy Tipton, Signature Literary Agency) is the author of THE RACHEL TRILOGY--Rachel's Secret, Rachel's Promise & Rachel's Hope (Second Story Press).Rachel's Secret received a Starred Review in Booklist and was named a Notable Read from the Association of Jewish Libraries. Rachel's Hope was shortlisted for the Vine Awards for Canadian Literature in 2016. Before turning to fiction, Shelly was a freelance journalist for the Toronto Star, National Post, Maclean's, and Canadian Living.
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