Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: TUESDAY, April 10, 1990 TAG: 9004100035
SECTION: EXTRA PAGE: E-1 EDITION: METRO
SOURCE: CHARLES HITE MEDICAL WRITER
DATELINE: LENGTH: Long
Marjorie and Celia Jacobs are complex, perplexing cases. The twins, now 7 years old, were irritable and difficult to satisfy as infants. No amount of walking or cuddling seemed to comfort then. It was hard to get them to sleep.
At 10 months of age, about the time they began walking, they began biting each other. It was a habit that lasted more than two years. A tic or just sibling rivalry?
The question haunted their mother. "When you have twins, it's hard to know whether it's twin behavior or not."
They did poorly in day care, finding it difficult to get along with other children. At home, they rarely got along with each other. It seemed at times to Jacobs that she needed a separate home for each twin. At least that way, they wouldn't provoke each other.
Jacobs sent them to separate classes at preschool and sent them on alternating days so she could have time alone with each twin. The girls seemed overwhelmed if they were around a group of children. They complained it was too noisy, too loud. It was as if their senses were being overloaded.
The first tic came when Marjorie was 4. She began gulping air and swallowing it. Jacobs didn't know what to make of her behavior.
Celia was nearly 5 when she began an exaggerated blinking. Her parents took her to an allergist and eye doctor in hopes of finding a cause.
Later, the blinking gave way to twitches in the face, sudden turns of the head and arm jerks.
There were other behaviors that Jacobs now believes were tics. At dinner time, for instance, the twins deliberately threw their plates and cups across the room. They did it over and over and over. No kind of discipline would make them stop. It was as if they had a need to hear the sound of crashing plates. This lasted a year and a half.
As soon as they were old enough, the twins took their clothes off as soon as they were dressed. Again, nothing seemed to stop them. Jacobs had to use pins to keep their clothes on.
The twins repeatedly took the sheets off their cribs and threw them on the floor. "I gave up," Jacobs says. "It was absolutely futile."
The twins were seen a couple of years ago by Dr. Michael Sisk, a Roanoke neurologist. It wasn't until last spring - after he had observed a pattern of tics for more than a year - that Sisk could make the diagnosis of Tourette.
Celia and Marjorie have been through the whole gamut of Tourette medications. Before the diagnosis was firm, they tried antidepressants. They didn't help. Then came Ritalin and other drugs traditionally used in children with attention deficit disorder/hyperactivity. They made the tics even worse.
After the diagnosis, the twins were given haloperidol. For a couple of months, it seemed to help. But once school started, "everything really fell apart," Jacobs says.
The twins, she believes, tried to hold in the tics during their classes. "But as soon as I picked them up, they absolutely exploded."
Jacobs couldn't control them. They screamed at each other and cried over small things. They tore up pictures they had drawn in school. They kicked, pulled hair and threw things.
Jacobs withdrew the twins from school.
Being around Celia and Marjorie is like waiting for a tightly wound spring to snap. An anxiousness and hostility seems to lurk beneath the surface of their actions.
It's hard for them to play together. When they are with each other, if one seems happy and content, then the other exudes sadness and anger.
"See, this is the captain," Celia says one day as she and Marjorie play on the living room floor with their pirate LEGOs. "I'll chop their heads off and then their legs off and then their arms."
"We're pirates, too," Marjorie answers as she moves a couple of figures in a toy boat. "We're just like twins!"
The twins know they have a disorder called Tourette. They know it affects their bodies and their behavior. But it's hard for them to describe the syndrome to others.
"I don't like it," Celia says. She says the Tourette makes her pick at her fingers and bite her lips.
"My face bothers me," Marjorie says of her facial tics. "It itches." Sometimes, Jacobs says, Marjorie tells her that trying to stop a tic is like "trying to hold back a hiccup."
Lately, Celia has had a lot of intrusive thoughts that upset her. One day, for example, she saw the family puppy eat a mole in the back yard. For a day and a half she wouldn't eat. Every time she sat down at the table, she remembered the puppy and the mole.
She also repeats nonsense rhymes: "Bussy, wusk, tusk. Bussy, wusk, tusk."
The frustration of dealing with tics has to aggravate the symptoms of Tourette, Jacobs believes. "I think sometimes with the twins, they feel really angry. They wonder, `Why is my body doing this to me? Why can't I stop it?' "
Jacobs, a nurse practitioner, and her husband, Bill, a pediatrician, worried for years that they somehow had caused the twins' behavior. They blamed themselves for being bad parents even though they had little difficulty with a younger daughter and an older daughter.The diagnosis of Tourette at least relieved that anxiety.
After working with Roanoke County school officials, the Jacobses enrolled Celia in a special program at Back Creek Elementary School. She receives one-on-one instruction part of the day but also participates in lunch, physical education, music and other activities with other pupils. They are hoping Marjorie soon will be able to enroll in a similar program.
In the past year, the Jacobses have sought to learn all they can about Tourette: They have the latest textbooks on the subject and have videotapes that document various behaviors in Tourette patients.
This fall, Sherri Jacobs attended a national conference on Tourette where she had time to chat with parents of other children with the disorder. Those conversations were eye-openers.
"What really blew me away was that every mother I ran into started talking about aggressive behavior in their children," Jacobs says.
There were tales of broken windows, holes in doors, and gashes in walls that came after outbursts of anger and rage. Jacobs realized that Celia and Marjorie weren't the only kids with Tourette who had problems controlling their tempers.
The experience convinced Jacobs that Tourette patients and their families in Southwest Virginia needed an organization that would allow them to exchange information and educate themselves and the public.
A regional chapter of the Tourette Syndrome Association can help families and victims cope with the stresses of the syndrome, Jacobs says.
"A lot of people make judgments about Tourette children and their parents," she says. "I've heard people say, `They're just spoiled brats. They're getting away with murder.' That's been one of the most distressing things for us."
Yet Jacobs and her husband consider themselves fortunate to have gotten a diagnosis when they did.
"We're actually one of the lucky ones," she says. "People can go for years and years before finally finding out what's wrong."
by CNB