In the 16th century, people with Tourette Syndrome would be likely candidates to be tried as witches. The jerking movements and phonic tics might seem to be convincing evidence for those inclined to believe in demonic possession, as in the first recorded case of a late 15th Century priest thought to be tormented by the devil.

Today the witch trials are over, but social stigma and bullying are still an all-too-frequent burden for children and adults with tic disorders. Symptoms are no longer attributed to possession, but exactly what Tourette Syndrome is has long been a matter of changing opinions.

A few decades ago, it was thought to have a psychological basis. Then it was considered a neurologic disorder to be managed with medications. The best evidence today points to an answer somewhere in between.

“Tourette Syndrome has both neurological and psychological components, and there seems to be strong hereditary influences with frequent co-morbidities including OCD, ADD and ADHD,” pediatric neurologist Leon Dure, MD, of Children’s Hospital said. “Thus far, medications have had limited success and come with a risk of side effects. Atypical antipsychotics are problematic for various reasons, and they weren’t really helping that much with outcomes in terms of function. They only lessened the frequency of the tic, and didn’t eliminate it, so the impact on the patient was still there.”  

Dure was looking for a more effective approach to offer patients with tic disorders. During his work with the National Tourette Syndrome Association, he came across CBIT, a Comprehensive Behavioral Intervention Program for Tic Disorders and Tourette Syndrome.

“The approach has been around a while, and studies have shown the benefit of competing response training and cognitive behavioral intervention, but no one seemed to have a program set up to offer it,” Dure said. “What I’d heard sounded promising. That’s when I started talking with Children’s Hospital and thinking about the most effective way to develop a program.”

CBIT therapy had previously been administered by psychologists on a limited basis, but had not been extensively offered. Cost and reimbursement issues may have been a factor, along with the possibility that some patients might fear how they would be perceived if they saw a psychologist for their condition.

“I was considering what kind of skills would be most useful in this kind of program,” Dure said. “Then I realized it would be a perfect fit for an occupational therapist. Promoting appropriate patterns of movement is what occupational therapists do. They are all about function and teaching patients how to improve their participation in daily life and society.”

Dure had one particular occupational therapist in mind to head up the program. He had worked with Jan Rowe, Dr OT at UAB and had been impressed with how she used occupational therapy to help Huntington’s patients.

“She’s gifted,” Dure said. “I knew she was retiring from UAB, so I approached her with the idea. She was interested and learned about CBIT techniques and how to use them. Children’s Hospital was wonderful in helping us launch the program.”

Rowe, the first occupational therapist in the US to administer a CBIT program, also sees the technique and occupational therapy skills as a perfect fit.

“Occupational therapy helps patients with anything they do in a day that is meaningful and purposeful.  If something gets in the way of achieving it, the focus is to help restore function,” Rowe said. “We’re accustomed to evaluating environmental and social situations and how they might influence the severity of symptoms. We teach patients how to improve movement, use psychological techniques in retraining habits, and apply relaxation techniques to deal with stressful situations.”

The first of the eight 60 to 90-minute sessions begins with awareness training.

“We teach patients to observe and identify situations that tend to increase the frequency of the tic and the urge that comes before it. Some describe the feeling as being like an itch that gets worse till the tic relieves it.

“CBIT doesn’t ask patients to suppress the tic. It teaches the brain to replace it with another action that is usually the opposite. For example, if the urge is to move the shoulder up, they respond by pushing the shoulder down. The body feels a release, but the movement isn’t noticeable, Rowe said.

Phonic tics that may include obscenities can be a problem for some patients with Tourette Syndrome.

“In verbal obscenities, there is a strong urge to do the forbidden, and the urge becomes so strong they feel they have to do it, even if it causes pain,” Rowe said. “Phonic tics can be helped with breathing control. We teach diaphragmatic breathing—in the nose, out the mouth, hold, 16 deep breaths and then practice.”

Patients are given homework to practice the alternate responses until they become second nature and the body learns to automatically respond to tic urges with the new behavior.  

Tics are often triggered by anxiety. CBIT uses role playing, context learning, relaxation techniques and cognitive behavior therapy to change the dynamic.

“We also equip patients with a tool kit of strategies so they know how to come up with a competing response if new tics develop. We help them plan a verbal response to questions if someone asks them about their tic. We also show them how to use relaxation techniques and other strategies to cope with situations that are likely to be stressful.”

Another important aspect of CBIT is engaging the family.

“If tics increase during family arguments or periods of stress, a parent’s first thought may be to comfort the child. However, that could be reinforcing the tic. A neutral response is more helpful. Instead of comforting, they can encourage the child to go practice his alternate response homework,” Rowe said.

Dure and Rowe believed in the CBIT technique, but even they were surprised by how effectively it worked. The clinic’s first patient was a boy from Arkansas. His life had been so impacted by tics that his family committed to drive the long round trip once a week for eight weeks in hope that this approach might work where others had failed.

“He took his homework with him and practiced the first week, then he came back and we worked on the alternate responses,” Rowe said. “By the time we finished that day, he left the second session tic free. As soon as the door closed behind him, Dr. Dure and I went into the back room and jumped up and down.”

The clinic has achieved a 90 percent success rate, and continues to get e-mails from the family of patients a year after therapy updating them on their child’s continuing progress.

“Since this is the first clinic of its kind, we’re seeing patients from all over the United States,” Dure said. “Dr. Rowe has been training occupational therapists at Cornell, and together they are working with a grant from the National Tourette Syndrome Association to develop a manual for occupational therapists so they can be trained to make CBIT therapy available everywhere. One of the great things about having occupational therapists involved is that every school in Alabama has access to an occupational therapist. The day may come soon when children with tics can get the help they need in school.”

For families with a child who has Tourette Syndrome, access to an effective intervention can make a life-changing difference.

Aside from social withdrawal, tic disorders can have a long-term effect on a person’s relationships and career opportunities. Having a tic can make it difficult to do or be trusted to do things requiring motor skills.

“These kids are usually so bright, and the tics disrupt everything. They even have trouble sleeping and wake up worrying about the tics—“what’s going to happen if I go on a date,” or “will people laugh when I read my book report,” Rowe said. “We recently had a 17-year-old who had been suffering with tics since the fourth grade. He had been through an ordeal with medications that didn’t work and side effects, and interference with so many things he wanted to do. He felt it was ruining his life.

“Within two visits, he was tic free. He said, ‘All those years—why didn’t someone tell me it could be like this?  This is great.’”