December 24, 2005, 12:59 PM
Boy Living With Tourette
At 8 years old, Ryan Proffitt enjoys energetic fun like bouncing on his pogo stick. But he has quieter times, too, in classic boy-and-his-dog ventures with Heidi, his adopted pet.
His days are full of schoolwork, but when he gets home, it?s best for Ryan to do his homework before he goes out to play.
His medication wears off in the afternoon. Then, the tics and gestures of Tourette Syndrome can come back, making concentration on homework tough.
For children and adults with Tourette Syndrome, the condition can be isolating. But two area families, including Ryan?s, have started a support group for children with Tourette Syndrome, their families, and adults with the disorder.
?Tic Free? holds its first meeting at 6:30 p.m. Friday at Heritage United Methodist Church on Leesville Road.
Ryan and his friend, Alex Kidd, 12, came up with the name for the group.
An estimated one in every 100 people in the U.S. has the neurological disorder that can range from mild to incapacitating.
For some, it?s a recurring but fleeting facial tic, or rapid eye-blink, or a sudden word or sound.
But others aren?t so fortunate. According to the National Institutes of Health, Institute of Neurological Disorders and Stroke (NINDS), about 200,000 Americans have the most severe form of Tourette Syndrome and have extreme sudden movement of the head, hands or legs, intense grimaces, and even the calling out of words or sounds.
Rebekah Proffitt, Ryan?s mother, wants to make sure people understand that Ryan doesn?t do the motions on purpose. She?s talked to his class at school and answered questions.
?One child raised her hand and asked, ?Is he going to die?? I said no.?
Other children wanted to know if they could catch it. ?It?s not contagious, you can?t get it by sitting next to him or breathing his air,? Proffitt said. She sent a letter home to the parents, with a picture of Ryan on it, and a brochure about the disorder.
Ryan tries very hard to hold in his symptoms, not wanting to be different. Tourette?s is not who he is. Ryan is a child with an agreeable personality, a sense of humor, an interest in the world and a goal to be a Marine.
Tourette Syndrome has been part of Ryan?s life since before he can remember.
Tics showed up ?when I was 3 years old,? said Ryan, who was diagnosed at age 6 and told this year, at age 8.
The appearance and disappearance of mannerisms were thought of as temporary habits and a phase that he?d outgrow.
For example, when he first started to talk, said his mother, he would repeat the last word in a sentence, almost like an echo. When he was in first grade, he had episodes of rapid eye blinking that brought him home with a note from the school nurse. The constant blinking had made his eyes burn and interfered with reading.
At age 6, he began clearing his throat a lot. The feeling prompting it was ?like a normal throat when a throat feels stopped up,? said Ryan. The clearing made his throat sore, which led to testing for allergies or infection.
Rebekah Proffitt mentioned to her mother, a kindergarten teacher, ?He?s got something again; he will not stop clearing his throat.?
?You?d think he has Tourette Syndrome,? she said, recalling a movie she?d seen.
Surprisingly, her mother responded by saying that Ryan seemed to have the same symptoms as a child in her class who had Tourette Syndrome.
Proffitt went online that night and began looking up information on the disorder, defined in the 1880s by the French physician, Dr. Georges Gilles de la Tourette.
?I read for two or three hours,? she said.
What had seemed like isolated habits began to take on a pattern and look like symptoms.
She printed out information to share with her husband, and his parents who live with them.
They called the doctor the next day.
According to NINDS, diagnosis of Tourette Syndrome is most often made between ages 7 and 10, but it can occur earlier or later.
Dr. Robert S. Rust, University of Virginia professor of neurology and pediatrics, uses the term condition rather than disease or disorder to describe the disease.
?It is a condition and a variation of human behavior with a very complicated connection to how a person is a person,? said Rust, co-director of the Dreifuss Comprehensive Epilepsy and Child Neurology Clinics.
?Generally speaking, Tourette?s is a mild condition,? said Rust, whose pediatric clinic sees many children with Tourette?s.
Children can sometimes have ?transient tic disorder -- tics that last a few weeks or months and then go away.? Some have tics that show up in times of anxiety, while other can have them turn up in quiet times.
To be Tourette he said, a combination of motor tic and vocal tics are present and persist for a year or more. Problems, which involve calling out of troublesome words like obscenities or hurtful words, may be akin to what Rust terms ?threshold problems.?
?Most of us have had times with a Freudian slip of the tongue and say what we had an urge to say,? Rust said. For instance, when noticing a person is overweight, a person with Tourette?s might inadvertently call out ?fat, fat.?
However, he said, ?only a small number of Tourette?s patients are troubled by off-color expressions or other sorts of words that exceed our usual thresholds to control expressions we would regard as socially unacceptable.?
Like other patients in the general population, children with Tourette Syndrome may be troubled by obsessions and compulsions, said Rust.
?Examples could include a ritual for going to bed, keeping one?s possession in a certain order, or performing other tasks in a particular way,? he said. That may create difficulties for the child, he said, but it does for anyone.
?Medications can significantly reduce the number of tics, but seldom makes tics go away entirely,? said Rust.
Rust doesn?t see the child as being particularly fragile, although their parents may think so. It?s important, he said, to tell the children what they have.
?Children always know when their parents are worrying about them, and that whispers mean something. And they always imagine that it something terrible.?
It helps the child when parents make no secret of Tourette Syndrome.
It can help by encouraging people to be kinder to each other, said Rust, and it helps to point out that ?some people wear glasses, or are too heavy or have something else about them,? and a child who has Tourette Syndrome has ?a variation in human behavior.?
For Adele Kidd, whose son Alex began showing symptoms of Tourette?s in kindergarten, the new support group is a way to build understanding of the condition.
Kidd hopes that through Tic Free, people will become more educated about Tourette Syndrome.
?We as parents want to do the right thing, and we don?t always know if we are.?