by Michele Berhorst • October 16, 2019
Ryleigh Moran watches a video recommended by Karen Balk, MOT, OTR/L (right), that explains what tics are to show to her classmates.
Ryleigh Moran, 11, was just your typical “tween.” She was active in sports, engaged at school and enjoyed hanging out with friends and family. Ryleigh did have a slight head tic, but it did not really concern her mother, Amanda, who experienced a similar mild tic. In the span of one weekend, however, Ryleigh’s tic became so severe that her pediatrician thought she was having seizures.
“It just came on so hard, and it wasn’t something we had ever seen Ryleigh do before. The pediatrician got us in to see a neurologist at Cardinal Glennon Children’s Hospital the very next day,” Amanda recalls. “In addition, Ryleigh would shout out words or phrases. For example, she kept saying over and over, ‘I’m a giraffe! I’m a giraffe!’ I was sure she had a brain tumor because all of this behavior came out of left field so fast.”
After examining Ryleigh, the neurologist assured Amanda that her daughter was not having seizures – it was tics. The Tourette Association of America defines tics as “involuntary, repetitive movements (head jerks, arm movements) and vocalizations (throat clearing, random words).” Onset of tics occurs between the ages of 5-7 years, and tics tend to increase in frequency and severity between the ages of 8-12 years. At this point, Ryleigh was having up to 30 tics a minute. Amanda reached out to a teacher who was familiar with the disorder and whose husband works for BJC HealthCare.
“He recommended we see Dr. Kevin Black, a movement disorders neuropsychiatrist at Washington University School of Medicine. At the time, Dr. Black wasn’t seeing new patients,” Amanda says. “I continued Googling him and his research, and I came across something called CBIT and the Movement Disorders Clinic at the School of Medicine.”
CBIT stands for Comprehensive Behavioral Intervention for Tics, and Amanda called to make an appointment with Clinical Specialist Karen Balk, MOT, OTR/L, in July 2018. As one of the only certified CBIT providers in the area, Balk has been practicing as a CBIT occupational therapist for Washington University Occupational Therapy for four years. She recently joined the interdisciplinary team at the Washington University Pediatric Movement Disorders Clinic to provide occupational therapy consults for clients to help manage tic disorders like Ryleigh’s from day one.
“I would describe Ryleigh as one of my ‘kids in crisis,’ who have tics impairing every element of their day – school, sports, social activities and even sleep,” Balk says. “Ryleigh had so many tics that we focused on the ones that were happening the most frequently and disrupting her ability to participate in school and other activities she enjoys.”
Balk began working with Ryleigh one-on-one, using CBIT strategies so she became more aware of her tics and teaching her competing behavior when she felt the urge to tic. “In addition to CBIT, I work on occupational therapy environmental strategies with patients to manage the tic triggers. For example, if the tics worsen when a child is hungry, I recommend they have a snack available to help them get through the class or activity,” Balk says, who also participated in Individualized Education Program (IEP) meetings at Ryleigh’s school to advocate and educate on how to manage tics in the school setting. “Our goal in the clinic is to get the tic under management and give the patient the tools and supports to get them back to doing what they want to do. We accomplish that through medical interventions and the services I provide.”
This interdisciplinary approach between psychiatrists, psychologists, neurologists and occupational therapists is why the Tourette Association of America designated Washington University School of Medicine as a Center of Excellence in July 2019. “We have been collaborating and conducting research on Tourette and tic disorders for a long time. Being designated a Center of Excellence recognizes those efforts and our commitment to our patients to provide a team-based approach to care,” explains Kevin Black, MD, who serves as the Center’s director. “Another key element to this approach is connecting the patient and their families to the local and national Tourette Association chapters and other resources in the community. Karen makes sure her families know what additional supports beyond our clinic are available.”
Amanda can definitely see the difference in her daughter after receiving the clinic’s services. “Ryleigh is much more confident now. She still has tics, and she knows they are not going to go away, but she has been empowered. Ryleigh knows who her ‘people’ are at school that she can turn to if she needs support,” Amanda says. “She is more comfortable talking about her disorder and educates people when she can about her tics so they understand what is happening when they occur. Most of all, she knows she is not alone. She recently asked Karen about Camp Twitch and Shout, a summer camp for kids with Tourette syndrome.”
For Balk, this outcome is why she became a CBIT provider in the first place. “Working with my CBIT patients is extremely rewarding. Learning these cognitive and behavioral strategies can be life changing for my patients and their families. I love being able to make such a positive difference in someone’s life. That's the main reason I became an occupational therapist – I wanted to help people live meaningful lives.”
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