The NeuroDevelopmental Science Center’s (NDSC) services for patients with tic and Tourette disorders was added to the Tourette Association of America’s (TAA) list of Centers of Excellence, in July, becoming one of the only centers in the Midwest with this designation and joining the ranks of institutions like Baylor, Johns Hopkins and Yale.
According to pediatric psychologist Dr. Katrina Lindsay, the Centers of Excellence program aims to improve the quality of life for people with Tourette syndrome and other tic disorders (which are characterized by vocal and motor tics) by promoting the highest level of care, research, education, training, advocacy and awareness for these conditions.
While there is no cure, Dr. Lindsay says patients can find success controlling or minimizing their tics with interventions like those taught in cognitive behavioral interventions for tics (CBIT) programs.
As one of the providers of Akron Children’s CBIT program, she says the hospital was encouraged to apply for the center of excellence designation after the TAA became aware of the NDSC’s large patient volume and annual community event called TIC (Together In the Community) Night Out.
“TIC Night Out is a community-based initiative where we ‘shut down’ a fun place so children with Tourette disorder (TD) and their families can spend a day together, make friends and not feel ‘different’ for a night,” she said.
The center also stood out for its research efforts.
“We have a multi-year study on the implementation of the Children’s Illness and Recovery Program (CHIRP) for adolescents with TD in a “teen group” format (called “Tic Talks at 5’o Clock). We presented on this topic as a lead symposium in August at the American Psychological Association in Chicago along with the original author of CHIRP,” Dr. Lindsay said. “In addition, we have established a relationship with Kent State University’s Anxiety Lab and Dr. Chris Flessner, and we are also exploring parental accommodation in families with TD.”
Multidisciplinary collaboration also played a factor in the designation.
“We have an interdisciplinary model built right into the standard operations of the NDSC,” said Dr. Lindsay. “I work side-by-side with neurology and neuropsychology so we can engage in collaborative and comprehensive care. We have partnered with the Pain Center, as many children with TD have chronic muscular pain due to repeated movements, and the division of Psychology and Psychiatry, who see my patients after they complete CBIT.”
For children and teens ages 7-18, CBIT teaches kids to change their behavior over time and tic less. A study by the National Institute of Mental Health found CBIT to be more effective than basic supportive therapy and education.
“CBIT teaches kids to become more aware of their tics, trains them to perform a competing behavior when they feel the urge to have a tic and to make changes in daily activities that can reduce the number of tics,” said Dr. Lindsay.
Almost all kids with TD report being bullied or misunderstood. In Ohio, 2.5 million children under the age of 18 have TS or another tic disorder.
Two of Dr. Lindsay’s patients who have completed CBIT were recently trained as youth ambassadors. According to the TAA, youth ambassadors bring together, train and support teens to advocate for and talk about TS and tic disorders in their community. The goal is to educate children all over the country about TS and to spread tolerance and understanding while displacing myths and stereotypes.
Allen Shoaff, 16, of East Canton, and Katie Coburn, 13, of Copley, went to Orlando, Fla., in July for ambassador training that helped prepare them to raise awareness about TD. They were among 20 youths selected nationwide for the program.
Allen looks forward to his role as an advocate. “I want acceptance and inclusion for people who have TD,” he said. “And, for the people who don’t have it, I want them to have a better understanding of how to accept it in society.”