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Life's A Twitch! Celebrating 15 years.
1998 - 2018
Life's A Twitch! Celebrating 15 years.


Tourette Syndrome Still Being Missed in Children



Early Diagnosis Is Key to Better Mental Health


Monday September. 25, 2000: When Duncan McKinlay was growing up in Ridgetown, Ont., everyone called him the "class clown" because he would clear his throat, bark, or snort repeatedly in school. It irritated his teachers because no matter what they said to him, they couldn't get him to stop. No one knew that his behaviour was uncontrollable or that he had Tourette syndrome.

McKinlay developed Tourette syndrome when he was seven but he wasn't diagnosed until he was 19. For those 12 years, he didn't know what was wrong -- but he knew he had a secret. "It was better to be kicked out of class for being a class clown than to have everyone realize that you can't help these things," he tells WebMD.

Tourette syndrome is a neurological disorder characterized by tics -- involuntary, rapid, sudden movements or vocalizations that occur repeatedly (throat clearing, grunting, verbal outbursts, and humming). The most common first symptom is a facial tic, such as rapidly blinking eyes or twitches of the mouth.

The cause is not known. Research suggests that it stems from the abnormal metabolism of at least one brain chemical (neurotransmitter) called dopamine, but other neurotransmitters, such as serotonin, may also be involved. The disorder usually starts at age seven, but can begin anytime before 18. It extends into adulthood, but with adjustment and treatment can become less prominent.

Many people associate Tourette syndrome with the vocal tic in which one shouts socially unacceptable words uncontrollably. In fact, those types of outburst are only found in 10% to 15% of the people who have the disorder.

"When I first went to be diagnosed I shuttled between a few different people," says McKinlay. His treatment ranged from eye drops for his blinking to antibiotics for his throat clearing and other vocal tics.

A new study out of London, Ont., suggests that proper diagnosis is still being delayed because children with vocal or facial tics are being referred to head and neck surgeons rather than neurologists. At this week's annual meeting of the American Academy of Otolaryngology -- Head and Neck Surgery Foundation in Washington, D.C., Lorne Parnes, MD, a head and neck surgeon at the London Health Sciences Centre, will present four cases of children with Tourette syndrome who were referred to him.

Part of the reason why proper diagnosis is being missed or delayed, he says, is that over half of those with Tourette syndrome also have an associated obsessive compulsive disorder, or associated attention deficit hyperactivity disorder (ADHD). "Doctors and parents alike think these kids have behavioural or psychological problems, or they are doing this to seek attention when in fact this is a neurological disorder," Parnes tells WebMD.

"It's not uncommon for some of these kids to be referred from one specialist to another," he says. They may be referred to a psychologist or psychiatrist for behavioural problems, to allergists because they sniff and clear their throats, or to ophthalmologists because they blink and roll their eyes.

"I have a son with Tourette syndrome, so I know a lot about it," says Parnes, whose goal is to make other doctors more aware of the disorder in their daily practice. "Since he has been diagnosed and treated, I know how much better it has been."

Children also learn to hide ticks in what would be perceived as a normal movement. For example, if a child has a tick in which he has to stretch his mouth wide open, he might pretend that he is yawning and incorporate that tick into a yawn.

Tics can also wax and wane over a day or a few months. Kids also have the ability to suppress tics for seconds to hours. But "it is kind of like an itch eventually you have to scratch it," Parnes says, because suppression merely postpones more severe outbursts. Typically, tics increase as a result of tension or stress and decrease with relaxation or concentration on an absorbing task.

Paul Sandor, MD, director of the Tourette Syndrome Clinic at Toronto Western Hospital -- the largest clinic dedicated to Tourette syndrome in the country -- sees six or seven new cases every week and has a waiting list a year long.

"I don't have very many people who are referred to me from [ear, nose, and throat] specialists. Hardly any," he says. "In fact, the clinic gets very few referrals from specialists at all." More often, he says, it is the parents who recognize the disorder in their own child from a television program or an article they have read in a magazine.

Sandor estimates that 3% of Canadians, or 900,000 people, have some form of Tourette syndrome. Many of the cases are mild and not everyone requires treatment. He stresses that early diagnosis is important for the child's psychological well-being.

As an adolescent, McKinlay says, he often thought of suicide. "Growing up, I really just felt that I had a big secret and a very bad secret because as hard as I worked to hide all these different impulses inside of me, every once in awhile a tiny one would slip out. I would be so ostracized, so ridiculed, and so grilled by my parents that my logic was if they reacted that big to this little bit, if they knew everything that was hiding inside me I would be locked up. They wouldn't love me."

"So many of the scars I have aren't due to the symptoms themselves, they are from growing up not knowing. Early diagnosis and early education is the best gift you can give your child with Tourette's," he says.

McKinlay now lectures on Tourette syndrome and is completing his final year of a PhD. in clinical psychology at the University of Waterloo.

Copyright 2000 WebMD Canada Ventures, Inc. All rights reserved.

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