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A very perplexing syndrome

Tourette is hard to diagnose and often causes learning difficulties

Tuesday, December 17, 2002

By Janet Frank Atkinson

For 42 years, Saralyn Stockton lived with an annoying twitch in her left eye. Her doctors could never explain this involuntary movement. She wrote it off as nervous energy.

Finally, after taking her oldest son to a doctor's appointment after he experienced a mysterious seizure during high school, she had the first clue.

The Stockton family: Saralyn and Steven Sr. with their four boys in front of them. S. Douglas, the eldest at 22 is at left, with Ryan 12, Sean 15 and Evan, 18 seated next to him. Sean is the only one who has escaped the diagnosis of Tourette. Saralyn did not learn of her own mild case until she was in her 40s. (Lake Fong, Post-Gazette)

"The doctor said to me 'Do you realize you've been twitching your left eye since you've been here?' " said Stockton, 47. This led to tests that found she had a mild form of Tourette syndrome, a neurobiological disorder characterized by involuntary motor and vocal tics.

She and her husband Steven, 52, eventually learned that three of their four sons also had Tourette. It was a diagnosis that finally explained a pattern of depression, fits of rage and learning problems experienced by the two older boys that had rocked the Upper St. Clair family.

The cause of this genetic disorder that affects more than 3,000 Pennsylvanians is unknown, although there is evidence that it stems from an abnormality in neurotransmitters called dopamine, which are closely tied to alertness and pleasure.

People with Tourette are often portrayed as having Coprolalia, the uncontrolled verbal outbursts of obscenities or ethnic slurs. But this affects fewer than 15 percent of people with the condition.

Far more common are related conditions such as attention deficit hyperactivity disorder, obsessive-compulsive disorder and learning disabilities. The complex characteristics of the disorder are the focus of a national push by Tourette advocates for improved educational opportunities.

Congress is considering sweeping changes to the federal special education law called Individuals with Disabilities Education Act, which was last reauthorized in 1997. The act provides free, appropriate public education to eligible children with disabilities.

Actor Richard Dreyfuss, whose godson was born with Tourette syndrome 15 years ago, has gone on a publicity campaign urging that Tourette be recognized as a "separate and distinct disability.

"Educators continue to mistakenly see Tourette as a behavioral or conduct disorder, which results in the improper placement of many of these children," he said.

Eligibility for special services and accommodations should be based on the presence of symptoms that compromise school performance, he said.

"In many cases, as it stands now, a child must first fail before qualifying for services."

What's wrong with me?

There is a 50/50 chance of Tourette being passed through the genes, and the condition is three times more common in men than in women.

As in Saralyn's case, many parents do not know they have the gene, said Sue Levi-Pearl, vice president for Scientific and Medical Programs for the national Tourette Syndrome Association.

 
   

Related stories

An essay by S. Douglas Stockton on growing up with Tourette.

Children with this syndrome have varying educational needs.

Tourette syndrome resources.

 
 

One of the more perplexing problems with Tourette is the difficulty in diagnosing the condition. The Stocktons' first hint of a problem surfaced when their oldest son, S. Douglas, entered elementary school in the Upper St. Clair School District.

Tests showed he had an above-average IQ, but he had a short attention span. He often became so bored in his kindergarten class that he would lay down on the floor and cried. Although he had tested as gifted by the time he entered third grade, the quality of his work varied as he progressed through elementary and middle school.

Entering his freshman year at Upper St. Clair High School, S. Douglas found it increasing difficult to concentrate not only on schoolwork, but small tasks. He experienced a seizure after a soccer practice during his sophomore year, which eventually led to diagnosis a year later of Tourette, as well as attention deficit hyperactivity disorder and obsessive compulsive disorder.

Dr. Imad Jarjour, a neurologist at Allegheny General Hospital, said Tourette is hard to diagnose for many reasons.

The tics and other symptoms may be dismissed as nervous habits. Care from many different doctors and insurance issues also may contribute.

The Stocktons' second-oldest boy, Evan, 18, displayed the most severe symptoms of Tourette, which included the outbursts of profanities and slurs.

With his hand and facial tics and attention problems, learning in the structured environment of a classroom became almost impossible.

School officials worked with the Stocktons to develop a customized plan for Evan. But teachers didn't always follow it, his parents said. Nor did the district develop a behavior plan that would have helped teachers handle his classroom disruptions.

"The teachers thought it was easier to send him to detention than work with Evan's circumstances," Saralyn Stockton said.

Mary Lou Reaver, executive director of the Pennsylvania Tourette Syndrome Association in Gettysburg, Adams County, who tried to intervene on the Stocktons' behalf, said the staff refused to accept the severity of the boy's disabilities.

"Like many kids with Tourette, this young man was good-looking and appeared normal because he could hold his tics in .... he appeared so normal in school they refused to believe the report by psychologists that he needed special help.

"He did need it. When he reached his upper years, he certainly couldn't read at grade level nor do math at grade level. They thought he was lazy."

Upper St. Clair school officials would not comment on Evan's case.

Frustrated at school, he got involved in petty crime and turned to drugs. The Stocktons ended up sending him during his junior year to the Total Learning Center, a special school in the North Hills that could address his needs. He spent his senior year at Parkway Technical School, and graduated from Upper St. Clair High School last spring. He hopes to attend a technical school.

The third child, Sean, 15, has so far escaped the disorder, but Ryan, 12, began showing Tourette symptoms when he reached the fourth grade. He was having attention problems and displayed verbal outbursts and a mouth tic.

S. Douglas, now 22 and a senior in college, continues on Ritalin, which keeps him focused, but the family has battled their insurance company because it typically doesn't cover the medication for people over 18.

A regimen of antipsychotics, antidepressants and other medication for the three boys costs the family more than $3,000 a year.

The Stocktons hope that their experiences with S. Douglas and Evan will prepare them for the perils that may lie ahead for Ryan. "We want to get to the point where the kids can lead a normal life," said Steven Sr., who has involved the boys in Scouting as a way of achieving that goal.

Saralyn, a part-time wedding planner, recently organized a support group for parents of children with Tourette syndrome. It helps her to meet with other parents who have experienced the same difficulties and challenges.

"It's such a devastating diagnosis. Tourette is such a complex disorder," she said. "We want families to know that there are others out there facing the same issues."

Janet Frank Atkinson is a free-lance writer.

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