A Gallatin nine-year-old and his family are learning to deal with, and live with, Tourette’s Syndrome.
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by T.J. Huffman
Big smile. Happy kid. Constantly on the go.
That’s how people who know him describe nine-year-old Aaron Smith.
Making paper airplanes, shooting off model rockets with his dad, video games and computers, Aaron’s into all of that good stuff.
Aaron is a typical fourth-grader who happens to have a very unusual condition called Tourette’s Syndrome. Children with Tourette’s have both body and vocal tics which they cannot control.
“Aaron had a rough week,” said his mother, Wendy, recently. “It was the first time he let out a high-pitched screech. His body was jerking quite badly. Last weekend he had the stomach flu. Stress makes the tics worse.”
Aaron’s parents, Wendy and the Reverend Ray Smith, had concerns that something was happening with Aaron for some time.
“Two years ago Aaron started blinking more than normal,” says Wendy. “That disappeared on its own.”
Last April, Aaron began to have bouts of loud coughing that medicine wouldn’t clear up. The Smiths suspected allergies. They had Aaron checked out.
“We were told that it was a ‘habit cough,'” says Wendy. “We wondered what was going on.”
In June, Aaron began making jerking movements with his shoulders and head. The cough continued.
They took Aaron to Children’s Mercy Hospital, where they were told Aaron “might” have Tourette’s Syndrome.
Finally, on Oct. 22, they were referred to Dr. Batterson at the Joshua Child & Family Development Center in Grandview. The center is an outreach clinic of Children’s Mercy that deals specifically with Tourette’s disorder. Aaron received a comprehensive medical evaluation.
There is no test or X-ray to identify TS. Diagnosis is made by observation.
“When we visited the doctor, Aaron was ticking badly, so he was able to see his symptoms,” says Wendy.
Tourette’s Syndrome is a neurological condition resulting in a number of involuntary movements. The tics are sudden and repetitive. There’s no such thing as a “typical case.” TS affects different people in different ways. The tics may be mild and intermittent or frequent and severe.
“Aaron’s tics go on all day long,” says Wendy. “They only subside when he goes to bed and goes to sleep.”
For children, Tourette’s Syndrome is often accompanied by problems with attention and concentration.
“When he was age two or three, Aaron had difficulty with instructions,” says Wendy. “We had to tell him something two or three times before he would react. We’d call his name and he wouldn’t respond. We thought it might be his hearing and we had that checked.”
During his first month in kindergarten, the teacher noticed he was having learning problems and Aaron was tested for attention deficit hyperactivity disorder (ADHD).
“I’m glad we learned he had ADHD as early as we did,” says Wendy. “There’s a lot of controversy about it. Probably some children don’t have it. But for the ones who truly do have it, they are making great strides through behavior modification and medication.”
Wendy feels Aaron may also have very mild signs of another related condition called obsessive compulsive disorder (OCD).
“We touched on OCD with the doctor,” she says. “Aaron may be a little obsessive about hand washing. We’ll hear the water running and running. We have to remind him to turn the water off and quit. I think it has a lot to do with his being particular with things. But the OCD is not all the time.”
Aaron’s tics are completely involuntary. He feels an irresistible urge to perform the tics, much like the need to scratch a mosquito bite. Trying to control the tics only leads to a stronger outburst once they are finally allowed to be expressed.
“The tics are like an urge to sneeze that you can’t hold back,” says Wendy. “It has to have someplace to go. If Aaron tries to hold back his tics at school, then when he comes home it’s worse. Whenever he’s really interested in something, he’s able to control the tics for a short period. At school when he’s reading or involved with anything that has to do with science. Or if something has caught his attention. He’s fascinated with bugs.
Aaron does not have another symptom of Tourette’s called Coprolalia. Coprolalia is the use of swear words and the like. Though this condition has been sensationalized by the media, it is really quite rare.
“Aaron’s vocal tics are just noises, clearing his throat, coughing,” says Wendy.
People who don’t’ know about Tourette’s may find it hard to believe that the actions or vocal noises are not put on.
“We’ve not run into it too much,” says Wendy. “There will be people who will tease, make fun, and stare. That’s just how people are sometimes.”
Aaron is in Mary Jarboe’s fourth grade class at Searcy Elementary. The Smiths have been very pleased with the school. They feel everything possible has been done to protect Aaron’s self-esteem and emotional well-being and provide him with an appropriate education environment.
“Aaron gets along well in class and the school has been a wonderful support,” says Wendy. “Aaron’s classmates know about his Tourette’s and handle it well.”
In order to make sure Aaron’s behavior is not viewed as frightening or bizarre to the students in other grades, Wendy has held workshops to share factual information about the disorder with the teachers.
Genetic studies indicate that TS is inherited. The Smiths aren’t sure where the gene came from. Wendy thinks a brother may have had TS, though he was never diagnosed.
There is evidence that TS arises from a chemical imbalance in the wiring of the brain. This abnormal metabolism of dopamine, a neurotransmitter, affects boys three times more often than girls.
The Smiths have a daughter, Lora, 15, who has no symptoms of TS.
Medication can effectively improve attention span and decrease hyperactivity. So far, medication has not helped Aaron too much.
“But there are other medications to try,” says Wendy. “He’s on a new medication now. We just have to see how it goes for several months.”
Relaxation techniques may also be useful.
“Aaron seems to relax if we rub his shoulders at night,” says Wendy. “If he’s had a rough day, he has difficulty winding down at night and his muscles are sore from the jerking movements.
TS alone does not affect the IQ of a child. Aaron makes all A’s and B’s in school.
“Aaron gets good marks for his handwriting,” says Wendy. “Writing isn’t easy for someone with Tourette’s. His penmanship is wonderful. He’s very particular.”
People with TS seem to have their own way of thinking, seeing connections between things that someone else might not pick up on.
“I think Aaron sees things sometimes that the average person doesn’t,” says Wendy.
The complexity of some symptoms is often perplexing.
“It’s a confusing disease,” says Wendy. “The symptoms wax and wane. You never know if that’s it or if the medication is helping. The symptoms can go away for weeks or months at a time from what we’ve been told. From the age Aaron is until the age of 12 or 13, TS is at its worst, then the symptoms decrease after adolescence.”
Some people with TS show a marked improvement in their late teens or early twenties.
“It’s good to hear that,” says Wendy. “But we just won’t know for sure until we get there.”
At the Joshua Center, Aaron briefly met two other children with Tourette’s. “He was thrilled,” says Wendy. The Smiths are looking into a summer camp where Aaron could meet even more children who share his condition.
Sometimes Aaron feels self-conscious about his Tourette’s and gets a little depressed.
“I think Aaron is embarrassed at times,” says Wendy. “Most days he handles it well. Other days he gets kind of down. He wishes it would go away. That’s tough as a parent. You wish you could take it away.”