Duarte Couple Look for Key to Strange Disorder : Tourette: Independent study concludes that the disease is far more common than medical experts had assumed.
Dr. David Comings goes from room to room in the City of Hope National Medical Center Tourette syndrome clinic, making notes about his youthful patients’ latest foibles.
A 10-year-old girl talks dispassionately about her peculiar way of walking down a hallway. She’ll take a few steps, spin completely around, take a few more steps and spin again. It’s a ritual she can’t stop, says the girl, a short, bookish-looking youngster who gesticulates when she talks. “She can’t seem to remember to do anything,” added her father, who sits with her in the consultation room. “She’s off on a cloud. To get her to empty a wastebasket, you have to ask her four times.”
An 18-year-old college student in the next room says she has the holiday blues. As she speaks, she suddenly flings her head back in a rapid, jerky motion, emitting a grunt that sounds like, “Beh!” Then she continues her account. “The greatest thing in the world could happen, and I’ll be unhappy about it,” she says, twitching again. “Beh!”
A 10-year-old boy dumps a stack of magazines onto the floor and pounds on a table as his mother tries to talk to the doctor. “This is pretty much what we go through on evenings and weekends,” says the mother wearily. As the doctor writes a prescription, the boy confronts him. “Take that medicine off of there or I’ll kick your butt!” he growls like a Hollywood gangster. “I will, four-eyes.”
A 9-year-old girl races furiously through a magazine, practically tearing the pages in her haste. Her mother keeps her arms around the girl as if to prevent her from flying away like a rocket off a launching pad. “She’s stopped B-I-T-I-N-G the furniture,” she says, spelling out the word. “And she hasn’t been B-A-N-G-I-N-G her head against the wall.” Ignoring the adults in the room, the girl chants a little rhythmic tune: “Tuh-dum-dum-DUM. Tuh-dum-dum-DUM.”
One after the other, they come. There are people who bark or curse uncontrollably or lick their lips so frequently that they have red chap marks. There are blinkers and squinters and compulsive squirmers. And there are patients whose tics have finally been brought under control, mostly because they take a combination of tranquilizers and antidepressants.
Comings, a geneticist, and his wife, Brenda, a clinical psychologist, have seen about 1,500 families since 1980, when they made Tourette syndrome their life’s work. They have concluded that the disease, a behavioral disorder associated with a genetic abnormality, is far more common than medical experts had assumed.
“We started out thinking it was a rare disease,” says Comings, 54, a robust man with gold-rimmed glasses and gray hair that curls over his collar.
First described in 1885 by French physician Gilles de la Tourette, the disease had almost disappeared from medical literature by 1980, adds Brenda Comings, 46, slim and tailored, with grayish blond bouffant hair. “It hadn’t even reached the status of being an ‘important disorder,’ ” she says.
Then, in 1981, after working with dozens of Tourette patients at City of Hope in Duarte, the couple made a television appearance on a Los Angeles station. The telephone started ringing off the hook. The Comingses picked up 95 new patients that week.
“These were people who said, ‘I have the symptoms, and I’d like to make an appointment,’ ” says Brenda Comings, who conducts a private practice out of an office in the couple’s home in Duarte’s foothills. “They were pleas for help.”
Since that time, the Comingses have emerged as controversial interpeters of the disease, eager to spread the word about it through the mass media and prone to diagnose Tourette syndrome more frequently than their more conservative peers.
The Comingses say the disease is far more common than previously believed. As many as 1 million Americans have it in one form or another, they contend. They also believe that beneath the more bizarre aspects of the disease, other behavioral troubles are brewing.
The Comingses say they have tied the genetic syndrome to, among other disorders, alcoholism, obsessive-compulsive behavior, overeating, stuttering, dyslexia, depression, short temper and exhibitionism. “The (abnormal) gene seems to cause a chemical imbalance in the brain,” says David Comings. Specifically, it may slow the production of serotonin, a chemical that acts as a neurotransmitter, which delivers behavioral messages from the brain. The result is a loss of inhibitions, triggering the peculiar behavior tied to the disease.
“Each succeeding year, we turn up something new about it (the disease),” David Comings says.
By now, the Comingses have established themselves among the leading experts in a burgeoning field. They also have stirred up controversy among geneticists, some of whom disagree with the couple’s broad-brush characterization of the disease. At last year’s annual meeting of the American Society of Human Genetics, the Comingses’ work was the target of pointed criticism from a group of Yale researchers, who accused them of confusing symptoms with diagnosis. David Comings was president of the society at the time.
The critics, led by Yale geneticist David Pauls, said their own research had shown no unusually high incidence of the associated disorders, as claimed by the Comingses. “Tourette syndrome patients have symptoms of obsessive-compulsive disorder but do not have the disorder,” Pauls’ Yale colleague, Kenneth Kidd, said at the conference last December. “Different disorders can have symptoms in common.”
The controversy may be resolved when geneticists succeed in marking the crucial gene, so tests can show which patients carry it and which don’t. Seven laboratories in the United States and Europe are engaged in the search.
The emphasis in the medical community has been on identifying the disease’s genetic source, not on curing it--a far-fetched hope, given present technology.
“The Comingses certainly deserve plaudits in the public awareness arena,” says Sue Levi, the Tourette Syndrome Assn.’s liaison for medical and scientific affairs. “In terms of science, the jury is still out.”
Right or wrong, the Comingses, who were married in 1982, plow ahead with their work. Do they talk shop in their expensively furnished home with a sweeping view of the San Gabriel Valley? “We eat, breathe and drink Tourette syndrome,” Brenda Comings says.
The couple have co-authored medical journal articles. They conduct training sessions on the disease at schools and hospitals, make radio and television appearances to raise Tourette awareness and hold support group sessions with large numbers of their patients. They even put out a newsletter for patients called “Tic Talk.”
The professional partnership has been uneasy at times but ultimately productive, the couple say. “We have fairly distinct fields, which don’t get together that often,” David Comings says.
In the early days, while David was doing genetic studies, Brenda turned up some astounding similarities in behavior among widely disparate groups of patients. “In that first year, I saw 18 patients in a row, all children or teen-agers, who all told me about a fascination with knives,” Brenda Comings says.
But the upshot, they say, is that Tourette syndrome turns out to be a multifarious disease, with dozens of variants and a common denominator. “The thing that holds it together is the tics,” says David Comings.
In its more advanced forms, it can have profound effects on a family.
Three families gathered in the Comingses’ living room recently to talk about some of the side effects. “It can put a family into a completely chaotic situation,” said Jackie Mahoney, whose 15-year-old son, Michael, started exhibiting symptoms seven years ago.
A tall, high-strung redhead, Michael good-naturedly described his most recent tics. “I clap my hands, I go ‘sssst,’ like air going out of air brakes, and I stomp my feet,” he said.
“Dealing with the tics are the easy part,” said his mother, describing a lengthy history of school problems. The Riverside boy had been riotously disruptive at times, the class clown, and uncontrollable at home, she said. “Last year, if he didn’t like what was going on, he’d walk out of the classroom,” she said.
Gail Dorin said she suspected there was something amiss with her 8-year-old adopted son, Dennis, even before he started school. “But when I’d go to school and see all the kindergarten kids lining up, and there was Dennis running out of line and screaming, I knew there was something wrong,” said Dorin, who lives in Santa Monica. “The pediatrician said he was immature.”
“You never know what they’re going to do,” said Maryann Hernandez of West Covina, watching her introverted 12-year-old son, Albert, as he played on the living room floor with the Comingses’ Pomeranian. “One day he cut off all of his eyebrows and eyelashes. I didn’t want to hit him, so I cried.”
