John Rowe was a typical 11-year-old boy. He loved to play sports, loved to hang out with his friends, and he was a pretty good student, too.
Then the tics started. He blinked excessively. His whole trunk jerked violently. He stomped his feet. He repeated phrases again and again. He began scratching his arm to the point that it bled. And the worst part — no matter how hard he tried, John couldn’t control any of those behaviors.
“It was a vicious cycle,” says Cindy Rowe, John’s mother. “He would have tics, become anxious about it or try to stop them, and that created more tics. To see him hurting so much emotionally — and even physically — was terrible.”
John was diagnosed with Tourette syndrome, a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations known as tics. The Rowe’s searched for answers at home in Little Rock, Ark., but couldn’t find John any help.
After hours of research and e-mails, Cindy located Leon Dure, M.D., the UAB professor and director of pediatric neurology who directs of the Movement Disorders Clinic at The Children’s Hospital in Birmingham. He confirmed the diagnosis of Tourette syndrome and referred the Rowe’s to UAB’s Department of Occupational Therapy. The OT department was starting a new Pediatric Tourette’s Syndrome Clinic that focused on comprehensive behavioral intervention for tics (CBIT), a non-drug treatment option for battling the debilitating syndrome. Soon after contact, John was scheduled to be the clinic’s first patient in January 2010.
Three days after John’s first visit with CBIT coordinator Jan Rowe, Dr. O.T., the scratching stopped. When he visited the next week, his arm had healed, and he needed no band-aids.
“John’s story is just fantastic, and we couldn’t be happier for him and his family,” Rowe says. “And the great thing is, he isn’t the only success story. We’ve had a great first year, with about 85 to 90 percent success with our patients. CBIT is a program we believe in, and we want to let the people in our community know that we are here and ready to help.”
Drug-free behavioral therapy
CBIT is a highly structured, eight-session, 10-week therapy that forgoes treatment with drugs. Instead, patients are taught to become more aware of their tics and trained to do a competing behavior immediately when they feel the urge to tic. This competing response helps to reduce, and in some cases, eliminate the tic.
In John’s case, it was discovered his urge came from a sensation in his wrists.
“When we first asked John to describe his urge, he described a tingling sensation in his fingertips,” Rowe says. “The urge led him to put pressure to his fingers, and his best way to do that was to scratch. As part of his competing response we asked him to put pressure on his fingertips on a table or his lap by pushing down on them. But we discovered — and he discovered — as he tried it during our session, that it wasn’t coming from his fingertips at all, but rather from a sensation in his wrists.”
So instead, Rowe had John sit in a chair and put his hands beside him with the pressure on his palms. This enabled John to stretch his wrists, and the sensation went completely away.
“He didn’t have the need to tic after that,” Rowe says.
One of two CBIT clinics
UAB’s Pediatric Tourette’s Syndrome Clinic is modeled after the clinic at the University of Wisconsin-Milwaukee. UAB’s clinic is the only program in which OTs work in this way with children who have tics.
“This is a good fit for occupational therapists,” Rowe says. “Occupational therapy is all about your daily habits, routines and occupations. If your tics interfere with you being successful in those occupations, it makes sense to see an OT.”
Results from large, multi-site, National Institutes of Health-funded studies show that more than half of people who undergo CBIT will have significant reductions in tic severity and improved ability to function.
Complete elimination of all tics and other Tourette’s symptoms does happen occasionally, but it is not what is expected. CBIT is not a cure for Tourette’s; it is a tool that can help individuals better manage their tics and reduce the negative influence those tics may have on their lives.
The cost for the services is $300, which includes an evaluation and the 10-week program. “It’s not a moneymaker for us,” Rowe says. “We’re just trying to fill a community need.”
Most tic disorders are diagnosed and reach their peak between ages 10-12, and most will disappear as they get into adolescence and early adulthood. The small percentage of children that continue to tic into adulthood typically are the most severe.
Many Tourette’s patients are treated with medication, and medication likely will remain the primary treatment for tic disorders. However, as it becomes more widely available, CBIT may be used as a first-line treatment, particularly in young children for whom side-effects and other safety concerns may limit the use of medication.
John’s doctors in Arkansas initially prescribed medication to treat his tics, but he didn’t respond well to the treatment. That led his mother to seek alternative solutions.
John’s arm scratching tic was one of the more unusual ones to be treated in the clinic’s first year. The most common tics have been eye blinking, facial grimacing, grunting, tongue clicking, throat clearing, neck, shoulder and arm. Rowe also has treated a boy with a jumping tic.
Tourette’s is often accompanied by co-morbidities such as attention deficit with hyperactivity disorder and obsessive-compulsive disorder.
Children with Tourette’s also tend to have high anxiety levels. “It’s not uncommon for children to ask, ‘If I do this therapy, will my stress go down,’ or ‘Am I not going to stay awake at night all of the time worrying about things now?’” Rowe says.
When Rowe and her colleagues trained in the program under Douglas Woods, Ph.D., professor of psychology and director of clinical training at Wisconsin-Milwaukee, they learned to index the anxiety in clients and help them work through these issues.
“A significant percentage of our kids are in the above-average range for anxiety compared to their typical peers,” Rowe says. “But at the end of the program, we’re noticing a huge difference with a 90 percent positive response to CBIT and a reduction in their anxiety. That’s been another big success point for us.”
The anxiety led to some rough patches for John. Cindy specifically remembers an incident at her church. John typically would hang out in the church gym while his mom worked out upstairs. When Cindy came down after a workout one evening, she found John under the stairwell crying.
“He was hiding there because he was so embarrassed about all the jerking he was doing,” Cindy says. “Of course, the stares and questions — what’s wrong with you? — from others did not help.”
John’s therapy with Rowe was a revelation. His parents drove six hours from Little Rock to Birmingham eight times in a 10-week period for the treatment.
John doesn’t like long drives, but he never complained. He would often use that time to practice his exercises and do his schoolwork. Cindy said she and John’s father Roger told him the treatment was going to be hard work, and that it might be frustrating at first. But he was committed to doing what Rowe and colleagues asked him to do.
After the therapy, John had very few tics at all. In fact, he had his tics under control enough that he could perform better than ever on the baseball field — he was selected as the Most Valuable Player of a baseball tournament this past year.
“He was more confident,” Cindy says. “We could go anywhere again without worrying. He looked like a normal kid. We saw him develop the ability to better manage his anxiety by using strategies learned in the clinic. This improved our own stress level. I even use the strategies he learned myself.”