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.
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