When Nick Mull was about 6 years old, he started making a grunting sound nonstop.

“I thought it was a habit and him being annoying,” his mom, Kim Mull, said of the eldest of her three children.

“I kept asking him to stop and he wouldn’t, so we thought he was being defiant. It got to the point where we’d ask him to stop for one minute. Ten seconds later, he would do it again. We’d say, ‘Nick, you just did it again.’ He didn’t even realize it.”

Kim and her husband, Peter, first took Nick to a counselor. The Montville Township couple was referred to see a neurologist.

Nick was diagnosed with Tourette disorder, often also called Tourette’s syndrome, after an evaluation at Akron Children’s Hospital’s NeuroDevelopmental Science Center.

Children’s has started a tic and Tourette service and a Comprehensive Behavioral Intervention for Tics (CBIT) program, which teaches kids like Nick how to recognize and redirect their tics.

Most people probably have a tic of some sort in their lifetime, said Children’s pediatric psychologist Katrina Lindsay, who came to Children’s about 20 months ago and established the new tic and Tourette programs.

Common tics include eye blink or clearing your throat, particularly in high-stress situations, Lindsay said.

Tics can wax and wane, and don’t always need to be treated.

But when tics become functionally impairing and get in the way of making or keeping friends, concentrating in school or feeling good about themselves, patients may seek medical assistance, Lindsay said.

Diagnosing it

Tourette disorder is diagnosed when a patient has multiple motor tics and at least one vocal tic lasting more than 12 months. Only about 10 percent of people with Tourette disorder have outbursts of swearing.

“We’ve had kids come in who are maybe just working on a throat clear or a shoulder roll. The more complex kids might not be able to sit still in the room,” she said.

A lot of kids have first been sent to other physicians, for instance, an eye doctor if they are squinting or blinking too much with the thought that something is wrong with their eyesight, said Lindsay.

There is no cure for tics or Tourette disorder, and some tics may go away, said Lindsay.

In her program, she teaches patients how to recognize their tic and focus the tic to another less distracting motion. It’s retraining the brain, she said.

Patients look in a mirror to watch what might happen before a tic comes on. Lindsay has them describe the feeling right before. It may be a twitch of a thumb, she said.

“It’s almost like the feeling we have before we sneeze,” she said. “How do you put words to the feeling you have before you sneeze?”

Once patients get the tools to identify where the tic is starting, the work can begin to teach a different muscle group to react, she said.

Nick, now 10, developed other tics and obsessive-compulsive disorder, reacting by describing physical pain and hitting his head against a table when he hears some very common words, such as “mother” and “father,” or lip smacking and kissing noises. Obsessive-compulsive disorder is common in patients with Tourette disorder, Lindsay said.

“I have an eye blink,” Nick said. “I have a head jab and my face grimaces.”

Nick said he tells people who ask that it’s a habit he has. Lindsay worked with Nick to control his violent reactions to the common words — which can’t be avoided at school or in general — by learning how to relax and react in a different way. She has patients work their way up a “thermometer,” with the hopes that by the time they are exposed to the issue and have worked on coping skills, they are at the top of the thermometer.

Highlight of career

“Watching Nick defeat that lip-smacking phobia was truly a highlight of my career — to see him be so proud and mom be so relieved,” said Lindsay.

Lindsay said it’s important to help her patients face their phobias head-on. She has jumped into dumpsters with patients who have germ phobias and helped a patient who was afraid of mascots by working with the Rubber Ducks baseball team.

In December 2016, Nick went through Lindsay’s six-week Comprehensive Behavioral Intervention for Tics program.

Part of the program is a family component, but the idea is not to make parents the “tic police.”

“Awareness is in a different part of the brain than where tics live,” she said. “We have a tremendous drop-off in tics after that first session.”

Long waiting list

Since her program is only one of three in the state, the waiting list can be long, she said. So far, 150 patients have completed the CBIT program.

Lindsay said the first step for parents who notice a tic is to see a primary care physician.

For the Mull family, they are continuing to work with Nick on his tics, including finding a pen pal with Tourette disorder in England. Nick and the boy have been corresponding by letters. Lindsay hopes to expand the idea to other patients.

Kim Mull has also noticed that her two younger children are developing tics and her husband has an arm tic, which was never diagnosed. Tourette disorder can be hereditary, though no one else in the family has been diagnosed, she said.

Nick’s mother said educating people about tics and Tourette disorder will help.

“Once people are educated and understand it better, then they’re not as afraid of it,” she said. “To understand this is something he can’t help but it doesn’t affect how smart he is … It’s a way for me to educate so maybe there’s a little less bullying.”

Beacon Journal medical writer Betty Lin-Fisher can be reached at 330-996-3724 or blinfisher@thebeaconjournal.com. Follow her @blinfisherABJ on Twitter or www.facebook.com/BettyLinFisherABJ and see all her stories at www.ohio.com/betty.