Little-Known Condition Strikes Mostly Children : Health: Tourette Syndrome, often misunderstood and taken for nervous tics, is found equally among rich and poor, brilliant and slow.

The first time Edward and Rose DeSanctis noticed their son’s problem, the family was packed into the car heading out on vacation.

The unobtrusive little “beeping” sound Ed was making was as annoying as a fly buzzing around your head.

Ed’s pediatrician said it was a childhood tic. His parents thought it would go away until Ed’s older brother read a magazine article about a condition called Tourette Syndrome.

“Its symptoms are so diverse, so integrated into the personality, so complex, so multifaceted,” said John S. Hilkevich, a Tourette patient, counselor and researcher who co-edited a compilation of short stories by people with Tourette.

Some are given to twitching, grunting, shouting or gesturing involuntarily. Some scream obscenities--a condition known as coprolalia. In extreme cases, Tourette victims might repeatedly bang their heads, bite themselves or touch their own or another’s genitals.

With Ed, the beeps stopped after a few months, but then he would clear his throat until it was raw and jerk his head back. He’d also flap his arms “like a chicken,” the son says. And he would curse--repeatedly.

Ed was 10 at the time.

There also were times when “he would use the same word over and over--like a machine gun,” his father recalled.

Always, and to no avail, his father would yell, “Cut it out!”

Ed was diagnosed in the fifth grade and immediately began taking small doses of Haldol. But the drug, something of a tranquilizer, had side effects: It left him sluggish, famished and with a dangerous tendency to curl his tongue back.

Tourette, a genetic disorder first described more than 100 years ago by Dr. Georges Gilles de la Tourette, strikes in equal proportion the rich and the poor, the brilliant and the slow. Conservative estimates are that 250,000 to 500,000 people suffer from Tourette nationwide, said David E. Comings, genetics director at the City of Hope National Medical Center in Duarte.

No race or gender is immune, and researchers have found the disorder to be more prevalent among children. One in every 400 girls and one in 200 boys have Tourette, Comings said. There is also a higher incidence of the disorder in families where depression, alcohol and drug abuse, and anxiety attacks are common.

Despite increasing visibility, misdiagnosis is common; symptoms initially are treated as “nervous habits” that will disappear. Teachers can think a child with Tourette is a discipline problem.

Wanting to avoid misunderstandings, the DeSanctis family embarked on a public relations campaign. They didn’t want Ed feeling ostracized at school, on the bus or on the baseball field.

Before moving to Guilderland, a suburb of Albany, from Utica, the senior DeSanctis notified the school district and met with PTA groups. A documentary on Tourette was shown to students.

“If you’re honest with people they won’t give you a problem,” said the younger DeSanctis, now 24.

It took him 5 1/2 years to complete his undergraduate degree in math and business--great time for someone who had trouble concentrating. “If you’re reading a book, for instance, you have a tic, you lose your place, then you have to find your place again--and again,” he said.

He recently started working in the computer industry; his co-workers are unaware of his affliction, which, unlike most cases, has become less visible in the intervening years.

Part of the problem characteristic of the disorder is that its victims--most of whom have average to above-average intelligence--tend to hold back their symptoms in the presence of strangers. When that happens, the tics, or urges, are expressed more explosively afterward.

“It’s like a sneeze--ever try to hold back a sneeze?” his father said.

“It’s like a tension that builds up,” said Comings, who wrote a guide to the disorder, called “Tourette Syndrome and Human Behavior.”

“They can suppress the tics and they tend to suppress them when they’re in public,” he said. Too often, though, the tics vent themselves in places or at times when most people can exhibit control, like in church.

“Yet the person with Tourette Syndrome is not a loaded cannon waiting to explode,” said Tourette sufferer Adam Ward Seligman, who co-edited a book of anecdotes called “Don’t Think About Monkeys” (Hope Press).

The title of the book comes from a tale of a businessman who wanted to save on plane fare and sought out a holy man who told him: “Don’t think about monkeys.” From that moment, all he thought about were monkeys.

“Having Tourette Syndrome is a lot like not thinking about monkeys. The monkeys are the tics . . . obsessions . . . that are with us constantly, overwhelming our daily lives,” Seligman says in the introduction to the book.

Researchers and geneticists believe that genes affecting metabolism--particularly the lack of chemicals dopamine, serotonin and norepinephrine in the brain--are in some way linked to the disorder.

Still elusive is the primary gene that causes Tourette.