Taking on Tourette
Controlling a Life in Motion at Children’s Hospital of Pittsburgh of UPMC
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.
Diagnosing Tourette Syndrome
TS is a neurodevelopmental disorder affecting one in 100 people, says Keith Coffman, MD, a pediatric neurologist and co-director of the Tourette Syndrome Clinic, part of the Brain Care Institute at Children’s Hospital. 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 throat-clearing, sniffing, blinking, gestures, and 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.
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,” Dr. Coffman says.
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.
That’s especially difficult for adolescents who want to fit in. Tics, such as throat clearing, turning, or shaking, also can cause pain.
At the Tourette Syndrome Clinic, patients have access to a trio of experts: two pediatric neurologists with training in neurodevelopmental disorders, and an adult neurologist trained in movement disorders who provides transitional care for older teens.
Be in the Know About TS
Treatment 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. But the most important treatment is education, says Dr. Coffman. “That includes educating families, educators, and the general public about TS.”
“Knowledge is power. I’d be unnerved if I didn’t know what it was,” adds Seven, now age 14. Although he cycled through almost every tic, the movements and sounds have subsided with treatment.
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, wewere part of the process. That helped lower Seven’s anxiety, which helped ease the tics,” says Tom.