By Steve Spencer
In a quiet clinic at Children’s of Alabama, something remarkable is happening. Children who once struggled with uncontrollable tics—shoulder shrugs, throat clearing, eye blinking—are learning to take back control of their bodies through an innovative behavioral therapy that’s changing lives one session at a time.
Jan Rowe, Dr. OT had spent 25 years on the faculty at UAB when she learned about a new treatment approach for Tourette Syndrome and other tic disorders, and in 2010 she established the first OT-managed clinic utilizing Comprehensive Behavioral Interventions for Tics (CBIT). Today she runs one of only 27 specialized clinics in the United States at the Tourette Syndrome Center of Excellence, located at Children’s of Alabama, where they draw patients from across the southeastern United States and even as far away as Indonesia, Turkey, and Japan.
“Tics are non-rhythmic movements or sounds that occur as a result of the brain sending basic signals to a person,” Rowe said. “They’re usually preceded by what we call a premonitory urge. It’s something that you feel or sense.”
The science behind tics reveals a fascinating neurological process. For most people, the brain acts as a gatekeeper, filtering out unnecessary impulses. But for those with tic disorders, the neural gatekeepers aren’t as effective.
“With people who have tics, those gatekeepers don’t keep the signal from passing through. The urge that they feel is so strong that they can’t stop themselves from doing it,” Rowe said. When someone performs a tic, they experience relief due to a dopamine rush, which then perpetuates the cycle.
The statistics are staggering: one in fifty school-aged children have tics, and one in 100 have Tourette syndrome. While Tourette’s does involve tics, to be diagnosed with it, a person has to have at least two motor or physical tics and one vocal tic over the course of a year, be less than 18 years old, and not have had any kind of head trauma or adverse medication result.
The traditional approach to treating tic disorders has relied on pharmaceuticals, often with limited success and significant side effects. These medications can cause weight gain in children, sometimes making them targets for the very bullying their tics had already exposed them to.
By contrast, there are no side effects with the CBIT program, which relies on behavioral therapy. “We’ve had so much success with our CBIT program that it’s as effective, if not more effective than medications,” Rowe said.
CBIT is an evidence-based therapy with an approach that is simple, yet profoundly effective. “We teach them what we call a competing response, where we do something that’s opposite of the tic,” she said. “If you have a shoulder shrug, where you’re pulling your shoulder up toward your ear, then we’re going to do the opposite. When you feel that shoulder shrug about to happen, push your shoulder down and hold it.”
The competing response must be undetectable to others and sustainable for up to a minute or longer, until the urge subsides. Patients practice this technique throughout their day—at school, home, restaurants, anywhere tics might occur. The brain adapts to these new response patterns, as evidenced by functional MRI studies that have shown changes in neural pathways.
“The tics usually stop in five to seven days,” Rowe said. “Of course, every patient is different. I might see a patient for three or four weeks, and then maybe check out with them a month later, just to make sure they’re still good.
“We like to get them started in CBIT therapy early if it’s causing them any distress. When we have a little bit of distress registered by the child, they’re the perfect candidate for the CBIT therapy because they’re motivated to fix it.”
Rowe’s work also involves education for families grappling with misconceptions about Tourette syndrome. “Sometimes when the child is diagnosed, and parents hear the word ‘Tourette’s,’ they feel like their world has stopped,” she said. “People with tics and Tourette have average to above average intelligence. There’s no reason for parents or anyone else to think that they’re not going to do well.”
The clinic’s success rate speaks volumes: 85 to 95 percent of patients experience improvement.
For the small percentage with intractable tics who don’t respond fully to CBIT, options like deep brain stimulation exist, and it’s been successful, although this is usually a last resort because it requires surgery.
As children work through the CBIT program, Rowe emphasizes that this isn’t a cure, but rather a powerful management tool. “But,” she said, “there are very few things in life that you get these kind of results with. So if the child and family are willing, they absolutely will get success.”
