To parents of teenagers, it often feels like their mere presence annoys their children. But for D'Ann Searls, it is a fact.
"It's kind of a joke, right? You say, 'I can't even breathe around them,'" the Naperville, Illinois, mom of two told TODAY Parents. "Well, for me, literally — I can't."
When Searls took her 13-year-old daughter Avery to the pediatric neurology clinic at Northwestern Medicine in Chicago 10 months ago, it was because Avery, who has Tourette syndrome, found it physically painful to be in the same room as her mom.
Even the way Searls breathed or talked made Avery's body tense and jerk involuntarily, leaving her in pain so severe she would miss school to recover.
Avery was diagnosed with Tourette syndrome at the age of 8…
A year and a half ago, Avery's tics — which included shoulder-rolling, back-arching, eye-blinking, and mimicking, among others — took an unusual turn: Some of them began to be triggered by the presence of her own mother.
It began with Avery's need for her mother to say exactly the words she expected her to say. "If I asked her something and I wanted her to say 'Yes,' and she said 'Sure' instead, I would do a tic with that," explained Avery.
Then, her mother's breathing began causing Avery to tic. "I'm very aware of my tics, and sometimes when my mom would breathe, I would yell at her to stop. I knew it was causing my tics," said Avery.
To an observer, it might appear that Avery and her mom had a troubled relationship, but Avery said that the fact that her mom caused her tics was in fact because she felt so close to Searls. "I don't have control over my body, so I want everything else to be controlled, and I am so close to my mom that included her," she said.
When Avery's tics were at their worst, she couldn't look at her mother or talk to her. It was challenging for her to even be in the same room with her. For her mom, it was "really hard, because I wanted to be there for her."
The Searls tried everything to help Avery: holistic doctors, medication, elimination diets, neurofeedback, acupuncture, supplements. Finally, they found the clinic at Northwestern Medicine where Mindy Meyer, a pediatric nurse practitioner, has treated hundreds of children with tics like Avery's using Comprehensive Behavioral Intervention for Tics (CBIT).
CBIT is a non-drug alternative treatment that uses behavioral therapy to teach children how to manage tics on their own.
"We work through one tic at a time, and the kids drive it," Meyer told TODAY Parents. "They pick the tic that bothers them the most and causes them the most problems."
"The first thing we have to do is get to know the tic extremely well, which is a challenge, because when someone is diagnosed with tics and they are not doing CBIT, they ignore the tics. That's what you do to cope," she explained.
Meyer helps the children think through and identify every aspect of the tic — when it happens the most, any emotions attached to the tic, and what the specific urge is that precedes it. "It's awareness training," Meyer said.
Once a child understands the tic's traits and can catch it before it happens, Meyer teaches them to use a "competing response" to stop the tic from being able to occur along with deep breathing techniques to help keep them calm.
If the tic is shoulder-rolling, for instance, she teaches the child to hold their arms with their elbows out in a way that prevents them from making that particular movement with their shoulders. If the tic is coughing, she teaches the child to identify when the urge to cough happens and to keep their mouth closed and breathe through their nose until the urge passes.
Meyer focuses solely on tics, but many of her patients also see therapists to address mental and emotional aspects of their condition concurrently with CBIT.
Though CBIT has helped hundreds of children in Meyers's clinic, the Tourette Association of America warns that the fact that tics can be managed with the help of behavioral therapy does not mean tics are easily controlled without medication.
"There is concern that families, co-workers, and teachers will read about CBIT and conclude that tics are willful and easily controlled," the association wrote on its website. "We have known for years that this conclusion is incorrect and harmful to people with tics. Expecting people to 'stop ticcing' or treating them as if tics are done 'on purpose' increases distress and triggers efforts to voluntarily suppress tics, which is ineffective and leads to greater impairment."
Meyer's success rate, she estimates, is 98%. Most of her patients are able to work through their tics in a matter of months, and with the CBIT training, they are able to help themselves when new tics arise. Tourette syndrome is incurable, but it is, Meyer stresses, manageable.
Though Avery's case has unique elements and is more complicated than most, she has been able to work through 20 of her 26 tics in the past 10 months — and after a lot of work, she and her mother can now go shopping together, have conversations, and enjoy each other without the pain that accompanied their interactions just a year ago.
Despite her struggles with Tourette syndrome, Avery has lived her life, said her mom. "She's a great volleyball player," she said.
"I used to be embarrassed. I wouldn't go places, I couldn't look at my brother or mother. It's gotten so much better," said Avery. "We can be in the same room. It's not like her breathing is awful to me anymore."
Despite the toll her condition has taken on her emotionally and physically, Avery has persisted. "She has lived her life. She has not let it stop her, even though it has been so hard. I am so proud of her for that," Searls said.
Avery wants others to know that although Tourette syndrome is a very difficult part of her life, it does not define her. "Everyone is different in their own way. Tourette syndrome is just a little part of me," she said. "I play volleyball, I have a lot of friends, I do a bunch of things.
"There is hope," she said. "I want everyone to know that. No matter who you are or what you have."