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Patient Stories

When Tourette Syndrome Gets Between Mom and Daughter

Special Clinic Helps Teen

Before she found help at Northwestern Medicine, Avery, 14, had a strained relationship with her mother. Every time she would look at her mother or hear her speak, Avery, who has Tourette syndrome, would experience tics that caused her physical pain. As a result, her mother was very careful not to trigger Avery’s tics. That meant the two couldn’t do anything together ― including have a face-to-face conversation.

Tourette syndrome is a neurological condition that causes children, teens and adults to make movements they can’t control, known as tics. Motor tics can include eye blinking, head bobbing, shoulder shrugging and neck jerking. Vocal tics can include coughing, throat clearing and yelling. Avery’s mother, DeAnn, started noticing the tics when Avery was 5 years old. She was diagnosed at age 8.

Worsening Tics, and a Solution

Avery tried many treatments, including supplements and medications, but nothing helped. Avery had many tics that did not have a trigger. However, as she got older, she started having more tics due to a certain trigger — her mother. This is common in kids, who tend to tic more around those they are most comfortable with. Avery couldn’t even look at her mom without having tics. The two would have to distance themselves, which was challenging for both.

Because of the severity of her tics, Avery would experience back and neck pain that caused her to miss activities. Frustrated, Avery and her mother sought help at Northwestern Medicine Central DuPage Hospital, which offers a special clinic for pediatric patients with Tourette syndrome and tic disorders.

Taking on Tourette Syndrome

Although there is no known cure for Tourette syndrome, treatment options can help reduce symptoms. The clinic at Central DuPage Hospital is among a limited number in Illinois that offer Comprehensive Behavioral Intervention for Tics (CBIT). CBIT is recommended as first-line therapy by the Tourette’s Association of America.

CBIT is a non-drug treatment that involves highly structured therapy to help individuals manage their tics and improve their quality of life. Avery’s care team uses behavioral therapy, activities and games designed to help her retrain her brain so she can better control her tics. For example, now, when Avery feels the urge to mimic her mother’s movements, Avery will cross her legs instead.

“We work through one tic at a time, and the kids drive it. They pick the tic that bothers them the most and causes them the most problems,” says Mindy Meyer, APN, CPNP, a pediatric nurse practitioner and manager of the CBIT program. “The main treatment is habit reversal or a competing response, which is an activity that makes it impossible to the do the tic.”

Upon her arrival in the clinic, Avery had 26 tics. After a year of CBIT, that number was down to just six. “I couldn’t breathe,” Avery says of some of her tics when she first started treatment. Others left her with bruises on her chest and legs.

After working with Meyer for more than a year, Avery has learned several techniques to keep her tics at bay. She listens to the sounds of waves when she’s working on homework, riding in the car or going to sleep. She also turns to apps and other calming activities, such as breathing techniques for muscle relaxation and mindfulness activities.

“This helps because with Tourette’s, the autonomic nervous system is very active and the parasympathetic nervous system is underactive,” explains Meyer. “These activities help even out these responses of the nervous system so she’s less likely to tic.”

‘It’s Not Controlling Me’

Avery and her mother now have a strong relationship. By their fifth session of CBIT, they were able to have their first face-to-face conversation for 45 minutes, something they had not done for two years.

“It’s gotten so much better,” says Avery. “We can be in the same room. I’m able to have a conversation and just be with my mom.” They’re able to go to church, take family vacations and attend Avery’s volleyball tournaments together. The best part? Avery’s mom can now give her daughter a hug without Avery having a tic and pulling away.

Tourette syndrome isn’t defining Avery’s life, but she’s come to accept it is part of who she is. “You shouldn’t be upset, because it’s a part of you. And there is an option for it,” she says. “There’s not a cure, but there is a treatment that can help with it. You can come here and get the help you need.”

Avery says she’s now able to enjoy playing volleyball, talking to friends and concentrating in school, and she hasn’t missed a day due to back and neck pain. She hopes that by sharing her story, others know help is possible. “I still have my struggles, and it will always be a part of my life, but it’s not controlling me,” she says. “I want others to know there is hope.”