Seven Barnishin was just 11, playing with action figures alone in his Pitcairn home, when the tics began — involuntary arm flicks, head jerks, and sounds. “I freaked. It seemed like something else was controlling me,” he says.
Tom and Amy Barnishin first thought their son’s behavior was linked to the start of the school year and peer pressure. When symptoms grew worse, and other tics emerged, their doctor sent Seven to Children’s Hospital of Pittsburgh of UPMC where he was officially diagnosed with Tourette syndrome (TS) in January 2009. “We were blindsided,” says Amy.
TS is a neurodevelopmental disorder affecting approximately one in 100 people. Most cases are diagnosed between ages 3 and 12; the majority are boys.
The main symptoms are sudden, repetitive, uncontrollable movements and sounds called tics, including:
- Sniffing, blinking
- Head jerking
For a true TS diagnosis, tics must start before age 18, include two or more motor tics and at least one vocal tic, and last at least one year. Tics peak at the onset of puberty. Approximately 60 percent of children outgrow the tics, or the tics become so subtle only that person knows when they occur. The Movement Disorder Clinic at Children’s Hospital is dedicated to diagnosing and treating patients with TS.
Coping with Tourette
People with TS cannot control their tics. They experience a sensation that makes them feel like they have to move — like having to sneeze.
The earlier the diagnosis, the sooner children can benefit. Movements can interfere with school work. Children with TS often are bullied, teased, or viewed as being disruptive.
It can be especially difficult for adolescents who want to fit in. Tics, such as throat clearing, turning, or shaking, also can cause pain.
At the Movement Disorders Clinic, patients have access to pediatric neurologists with training in neurodevelopmental disorders, as well as adult neurologists trained in movement disorders who provides transitional care for older teens.
Treatment for Tourette Syndrome
Treatment for TS varies. While there’s no cure, medication sometimes helps control tics. Psychologists can teach habit reversal and relaxation techniques to help patients cope with stress and reduce symptoms. The most important treatment is education, which includes educating families, educators, and the general public about TS.
The Barnishins credit the team at Children’s for helping them understand TS, guiding them through treatment options, and providing support.
“Children’s gave us answers and helped us gain control over an uncontrollable situation. Instead of being spectators, we were part of the process. That helped lower Seven’s anxiety, which helped ease the tics,” says Tom.