For Families Of Kids With Tourette And Tics, Finding Help Can Be Difficult
On most days, the Akron Zoo is a quiet place when it closes down in the evenings.
But on a recent Friday night, it was roaring with guests at an event called TIC Night Out – a yearly outing for patients being treated for Tourette Syndrome and tic disorders at Akron Children’s Hospital.
Animal-themed songs like Elton John’s “Crocodile Rock” and the 2013 dance hit “What Does The Fox Say?” blared as the kids and their families hopped on the carousel or just monkeyed around and made new friends while checking out the exhibits.
Families in the Tic and Tourette program at Akron Children's Hospital ride the carousel at the Akron Zoo on Friday, Sept. 10, 2021. [Anna Huntsman / Ideastream Public Media]
Children with tic disorders and Tourette Syndrome often have a hard time fitting in because their symptoms can be disruptive. ‘T-I-C’ in TIC Night Out stands for Together in the Community – and the event was created to bring patients and families together, as many children with tic disorders often struggle to make friends due to their unusual symptoms.
“The first tics I had were the ones with my arms. I’d take both my forearms and I would bring them both up at the same time to my chest,” said Allen Shoaff, a recent high school graduate from East Canton. “We'd call that the velociraptor, because it looks like you prance around like a velociraptor.”
Allen Shoaff (left) and his mom, Shelley (right), pose before exploring exhibits at the Akron Zoo during TIC Night Out. Shoaff completed behavioral therapy for his Tourette Syndrome symptoms at Akron Children's. [Anna Huntsman / Ideastream Public Media]
Shoaff has Tourette Syndrome, a nervous system condition that causes him to make repeated and unwanted movements and sounds. Children are diagnosed with Tourette Syndrome if they have a combination of both vocal and motor tics, whereas a tic disorder means a child has exclusively one or the other, according to Katrina Lindsay, pediatric psychologist and director of the Tic and Tourette Service at Akron Children’s Hospital.
Common tics include throat clearing, coughing, twitching and shrugging shoulders.
“It was really frustrating because we didn't know what it was or why - it's just, they were happening, and we didn't know if they could stop what was going on,” Shoaff said.
Mike Tenda, a 14-year-old student at Ellet High School, gets his face painted at the Akron Zoo during TIC Night Out. [Anna Huntsman / Ideastream Public Media]
Akron Children’s is the only specialized center for tic disorders in the region. The service is hard to get into, with some patients waiting years for a spot in the program.
It can be difficult for kids with tics and their families to find help because there aren’t many health professionals who specialize in this area – despite a growing need, Lindsay said.
“About 10 percent of kids experience tics over their lifetime,” Lindsay said. “Knowing that, though, we're the only standalone tic and Tourette's service within the region, and so we have patients really coming from all sides of Ohio and including jumping the state lines to come to the Tic and Tourette service here at Akron Children's.”
According to the Centers for Disease Control and Prevention, more health professionals have recognized that behavioral therapy can be very effective in managing the symptoms of tic disorders, but few clinicians have been trained in these types of treatments.
Patients come from far and wide for CBIT therapy
The Akron Children's program began five years ago, and Shoaff was one of Lindsay’s first patients. After years of struggling with his tics, Shoaff began a behavioral therapy called comprehensive behavioral intervention for tics – known as CBIT – as part of the program.
CBIT is highly effective, Lindsay said, and because Akron Children’s is one of the only hospitals in the area that offers it, the program has a long waiting list.
“There are not a lot of providers that are trained in CBIT, so our clinic truly is overwhelmed. Our waitlist is north of two years,” she said.
Patients can get an alternative treatment while they wait, such as medication to manage their symptoms, Lindsay added. The majority of patients have a comorbidity, such as anxiety or ADHD, so they could work with a therapist to manage those symptoms as well, she said.
Katrina Lindsay addresses a crowd of more than 250 patients and their families whom she works with in the Tic and Tourette service at Akron Children's. [Anna Huntsman / Ideastream Public Media]
Through CBIT, patients learn about the brain science behind why their tics are occurring, and work with a doctor to come up with a new behavior to stop the tic when they feel it coming on, Lindsay said.
“I have [a tic] where I crack my wrists and they go in a circular motion. And the one that I do for that is, I take the inside of my fingers and I will clasp them together. That's the competing response for that,” Shoaff said. “Then, you focus on each week a new tic, and that can go on for as long as you need it to.”
On average, symptoms decrease by 80 percent after CBIT is completed, Lindsay added.
Akron middle schooler Christie London, a Tourette patient who attended the recent TIC Night Out event for the first time, learned to overcome a compulsive swearing tic through CBIT at Akron Children's.
“It was … ‘I effed your boyfriend,’” London said, as she and her mom chuckled. But it wasn’t always funny, she said.
“It was probably one of my most interfering tics, especially in public spaces where people don’t know about my tics at all,” London added. “It was really cool to know that I was able to stop these attacks and prevent them.”
Christie London (right) and her mother Tracy (left) were featured speakers at the TIC Night Out event. Christie is working with Akron Children's to overcome several tics, including a compulsive swearing vocal tic. [Anna Huntsman / Ideastream Public Media]
Patients also learn about mindfulness, relaxation and distraction techniques during the six-week therapy, Lindsay said.
“Tics oftentimes are linked to excitement and stress, so if I can teach their body how to relax, that just sets us up for success,” Lindsay added.
Before they can find a specialty treatment center or a doctor trained in CBIT, patients may go through years of incorrect treatment, or even live undiagnosed, said Amanda Talty, president of the Tourette Association of America.
Many times, kids are instead referred to an allergist because of their symptoms, like coughing and throat clearing, she said.
“It's really hard, I think, for doctors and frankly parents to really ascertain what behaviors are intentional behaviors and what behaviors are involuntary behaviors, especially if you are not familiar with Tourette Syndrome,” Talty said. “I think centers like this … are really integral to people's ability to get a diagnosis that they really need to get the appropriate treatment.”
Parents and families, particularly in areas where there is less access to health care in general, are often willing to drive three to five hours just for a CBIT program, Talty added.
“I think it is difficult in certain parts of the country, particularly rural communities and inner-city communities where health insurance may not … provide the kind of access to top doctors that that we would all desire to be available, I think it can be hard to find a clinician who is very well versed in the nuance of Tourette Syndrome and can really appropriately help treat,” she said.
To try to bridge this gap, the national Tourette Association of America is working to educate more doctors in CBIT therapy by offering training, according to officials. In the past year, officials were able to introduce or train around 700 new professionals, according to a spokesperson for the organization.
London from Akron got into Akron Children’s program last year by luck, according to her mom, Tracy. A spot opened up after a last-minute cancellation, she said.
“The difference in Christie and our management of Tourette’s before CBIT to where we are post-CBIT is radical ends of the spectrum,” London said. “Christie was ticking nonstop, every hour, in her sleep … and the opportunity to participate in the CBIT program has made all the difference in our lives and functioning and social and in school.”
Katrina Lindsay is a pediatric psychologist and director of the Tic and Tourette Service at Akron Children's Hospital. Lindsay has operated the program since it was created five years ago. [Anna Huntsman / Ideastream Public Media]
Although Shoaff also completed CBIT, his tics have actually worsened as he’s gotten older, he said.
But while his improvements might not always be seen on the outside, the program and events like TIC Night Out gave him confidence on the inside - and helped him stand up to bullies and educate his peers about this misunderstood condition.
“I wasn't as depressed. I didn’t deal with things like suicidal ideation or actions and things like that,” Shoaff said. “That was the whole improvement, was the mental state and going about just living life, regardless of what the tics are doing, because even though they're getting worse, I'm able to go out and live.”
"We all want to feel good about who we are and ourselves and in our own skin, and I think that was part of it. Allen didn't feel comfortable in his skin. He didn't feel comfortable as himself," his mom, Shelley Shoaff, added. "But it was sort of like, having this ownership and understanding all those pieces, he felt like, 'oh, this is me and this is kind of awesome.'"
In addition, Shoaff is currently a youth ambassador for the Tourette Association of America and was recently selected for a documentary about living with Tourette Syndrome.
Kids who are experiencing tics can still see their primary care physician, a therapist or a neurologist to get medication or other support for their symptoms, even if there is not a specialty center or CBIT program nearby or available, Lindsay said.
Ultimately though, Talty said more hospitals should invest in tic and Tourette clinics so CBIT programs and support for people with these conditions is more widespread.
“Until we know that everybody living with Tourette Syndrome or disorder is getting diagnosed, there’s always going to be a need for more programs … there's always going to be a need for access to experts,” Talty said. “I would love it if more people would take an interest in learning about the condition because if they do, I think the kids that Dr. Lindsay is treating are going to thrive in a way that previous generations haven't.”