A then 8-year-old Naperville girl who experienced violent head jerks and constant blinking was diagnosed with Tourette Syndrome, but to further complicate her case, the mother became one of her triggers—that is, until the family got the treatment they needed.
Avery, who asked that we not use her last name, is now 14 years old and has a lot to say, but the words sometimes don’t come out right.
“Tics are awful,” she said. “They are very frustrating.”
Tourette Syndrome is a disorder characterized by sudden, involuntary movements or sounds called tics.
“It causes a lot of pain because you do it so aggressively and over and over again,” Avery explained.
Avery had 26 tics, from shoulder shrugging to wrist turning, and her mom became one of her triggers.
“When she was age 10 or 11, that’s when she really started mimicking me and that just became one of her tics,” Avery’s mom, D’Ann, said.
For two years, Avery and her mom could barely hold a conversation.
“It is very common for kids with Tourette’s to tic the most around the people they are most comfortable around,” explains Northwestern Medicine nurse practitioner Mindy Meyer.
Meyer started treating Avery last year at Central DuPage Hospital with Comprehensive Behavioral Invervention for Tics, or CBIT.
Meyer teaches Avery how to combat the urge to tic by instead creating a competing response. For example, if you want to shrug your shoulder, keeping your shoulder down makes it impossible to shrug.
One concern with Tourette Syndrome is other co-occurring conditions like depression, anxiety disorders or OCD—that’s why experts say finding the right therapy is key.
“Anxiety causes tics, tics cause anxiety, so if we can break that cycle we’re then helping that,” said Meyer.
Tourette Syndrome was once considered rare, but now the Tourette Association of America estimates one in every 100 children has TS or another tic disorder.
CBIT has made a huge difference for Avery and her relationship with her mom, who says they are now able to shop and dine together.
After a year of treatment, Avery is down from 26 tics to four and is sharing her story to give other kids with Tourette Syndrome hope.
“There is definitely hope and with CBIT you can work with your tics and in a way to control them to get them to go away,” Avery added.