Understanding Tourette

A local family teams with experts to ease the stigma and stress of Tourette syndrome.

BY LAUREN SIEBEN  |  PHOTOS BY DAVID SZYMANSKI

It started with a single tic.

Sometimes it would be an eye twitch. Other times, it was a cough or a chirp.

For Grant Freeze of Fox Point, who was 7 years old at the time, the tics were irrepressible urges that often bubbled up in emotional situations, when he was excited or upset. For his family, the tics were an annoyance they tried their best to ignore.

But then the tics became more complex, evolving into a series of motions and sounds that Grant couldn’t control.

“There were so many, and they were starting to bother him and become noticeable in the classroom,” says Kellie Freeze, Grant’s mother. By the end of 2017, Grant’s tics were at their most intense, so Kellie and her husband, Scott, turned to Google in search of answers.

“We started doing some research and I came across some website that talked about tics and Tourette syndrome, and I didn’t really realize that they were related,” Kellie says.

Kellie and Scott were surprised to find that Grant’s symptoms matched with Tourette syndrome, a tic disorder that’s characterized by a combination of two or more motor tics with at least one vocal tic. The Tourette Association of America defines a tic as an “involuntary, repetitive movement and vocalization,” like Grant’s eye twitches, sniffs or chirps.

Connor and Grant Freeze enjoy a favorite pastime

Breaking the Stigma
For the Freezes, the idea that their son might have Tourette syndrome was uncomfortable at first.

“There is a stigma around the word ‘Tourette’ because of the way it’s seen in the media,” Kellie says. But Grant wasn’t shouting curse words or acting out in the way that Tourette is often portrayed in movies or TV shows, perhaps most infamously by Amy Poehler in the 1999 film “Deuce Bigalow: Male Gigolo.”

“The vocal tic that involves swearing gets a lot of attention, but that’s actually a very rare symptom that happens in maybe 10 to 15 percent of cases,” says Dr. Douglas Woods, a Tourette syndrome researcher and dean of the graduate school at Marquette University. Doctors usually arrive at a diagnosis after a process of elimination, Woods says. In some cases, kids might appear to be suffering from a different issue, like a sniff that doesn’t go away after a cold or frequent blinking of the eyes. After common conditions like allergies or vision problems are ruled out, that’s when doctors might consider Tourette syndrome.

Although Tourette syndrome can occur in adults, the disorder usually appears in adolescence. An estimated 1 in 100 kids between the ages of 5 and 17 in the U.S. has Tourette or another tic disorder, according to the Tourette Association of America. In some cases, tics subside as kids enter adulthood; in other cases, tics persist or increase in severity.

The Anatomy of a Tic
There is no cure for Tourette syndrome, but there are treatments, including medication and surgery. These days, experts generally recommend a behavioral therapy approach to treatment that teaches children and their parents how to manage their environments and control tics. While searching for information online, the Freezes found links to Woods’ research and his Marquette faculty page and saw that he was running a pediatric lab in Milwaukee for children with the disorder.

From left to right: Scott, Connor, Grant and Kellie Freeze

“It was the answer to a prayer,” Kellie says. She made an appointment for Grant to begin an eight-week cognitive behavioral therapy program at Marquette. During each visit, Grant worked with Woods’ team to break down his tics and learn how to regain control of his actions. “There’s no frills, there’s no gadgets, there’s no medicine,” Scott says. “You go in and they educate you.”

Grant says he likes learning the biology behind his tics. At home, he uses worksheets to monitor tics and performs exercises that help retrain his impulses.

Grant explains of the tics, “Basically my brain tells your muscles ‘do it now,’ and you have to, but there’s always a way you can stop that by calming yourself.”

That’s a new perspective that Grant gained through treatment at Marquette, Kellie says. In order to understand and manage a tic, it starts by first recognizing the impulse. Tics are often provoked by environmental or emotional factors. For example, if a student with TS is asked to read out loud in class and they become nervous, that anxiety can exacerbate tics and make them harder to control.

In an effort to redirect one of Grant’s tics — a painful motion of his jaw from left to right — Grant focuses on breathing in through his nose and out through his mouth as soon as he feels the urge to shift his jaw. By performing a more subtle action, he can avoid acting on the tic, but still gets the satisfaction of releasing his urge. This approach requires patience, but Kellie and Scott say it’s helping.

Behavioral therapy is also proven to be as effective as medication, Woods says. “It takes a lot more time and effort than it does to take a pill every day, but we know that once the person gets better on behavior therapy, our follow-up shows that they generally stay better,” he says.

But not everyone responds to treatment, and there is no one-size-fits-all approach to managing tics, Woods adds. And when tics aren’t bothersome or painful, treatment may not be necessary at all.

Woods’ next priority is finding ways to expand access to behavioral therapy beyond his clinic walls. Eventually, telemedicine could connect patients in remote areas to treatment, and online self-help guides are already available for people who can’t access in-person therapy.

Dr. Douglas Woods

“His Brain Right Now is a Puzzle”
For kids with Tourette syndrome, bullying from peers can make a challenging condition even more fraught. The Freezes say Grant has been lucky — his teachers have been accommodating, and his older brother, Connor, is supportive. But for people who don’t understand Tourette syndrome beyond the stereotypes in movies, the stigma often persists.

“At first, I was uncomfortable with the word ‘Tourette,’” Kellie admits. “On one hand, you don’t want to label your kid and put a stigma on them, but you also want to help redefine that label. … We can take that stigma out of Tourette and say it’s something that is inherited, just like Grant has blue eyes and glasses.”

For Grant, the diagnosis has been empowering. Now that he understands the mechanics behind his tics, he can start to make sense of them.

At 9-and-a-half years old, Grant is an avid and accomplished chess player; he beams with pride when he talks about winning against one of his teachers in a chess match last summer. To him, Tourette syndrome  isn’t an insurmountable roadblock — it’s just another challenge to conquer.

“He loves to figure out a puzzle,” Kellie says. “His brain right now is a puzzle, and he’s really working hard to try to figure it out.” MKE

 

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