On August 14, 2017, nine-year-old Novalee Gros became a little more different than everyone in her life. She woke up with her left eye closed. “I’ll never forget that Monday,” her mother, Michelle, remembers. They went to the eye doctor that afternoon, but no conclusion could be found. Soon, Novalee’s neck began turning to the left. She couldn’t control it. Other neck movements followed, creating distractions in her fourth grade class and exhaustion once she got home. By October, Novalee was fighting 10 complex motor and vocal tics including ones that forced her to blink, twist her neck, fling her shoulders back and forth, and jump repeatedly. The Gros family, distraught, went to multiple doctors to discover the cause.
Novalee wore a neck brace for a month because of a suggested neck injury. It didn’t help. She underwent CAT scans and MRIs, because of a possible tumor. They all came back negative. No one could diagnose Novalee until the family visited Texas Children’s Hospital upon the referral of her pediatrician. Novalee was diagnosed with Tourette Syndrome, a neurodevelopmental Tic Disorder. Tics are involuntary, repetitive movements and vocalizations. It is estimated that 1 out of every 160 children between the ages of 5-17 in the United States has Tourette’s.
The Tourette’s diagnosis set Novalee on a path of trial and error seeking the right treatment. Michelle shares, “We tried so many different medications for seizures or ADHD. No meds worked for her. In fact, they made it worse because they made her tired, and when she’s tired, her tics increase.” The only other thing to try was CBIT, which stands for Comprehensive Behavioral Intervention for Tics, a therapeutic program for people with Tourette’s. “CBIT has helped me know how to fight my tics and have more confidence in myself,” says Novalee. She looks forward to going to CBIT once a week because it’s “fun.” She has discovered an ally in her occupational therapist, Shannon. “My therapist has helped me learn that I am not alone because there are other kids who fight tics and that I have a lot of people who want to help me and care about me,” says Novalee.
CBIT has taught Novalee so many things in just a few months. She has learned to detect the feeling before the tic. She explains, “It feels like a tingling and an itching.” Once she recognizes the feeling of a tic coming on, Novalee uses a competing behavior or “exercise” to counteract the tic. “CBIT helps her trick her brain to do something else that’s less hurtful or distracting,” Michelle says.
Living with Tourette’s has been life altering and challenging. Novalee endures physical pain and emotional strain. “The left side of my neck is all tight and squeezed together. My muscles get tired, and every time I tic, my neck cracks,” she shares. Some tics cause her pain, and fighting them can be exhausting. Novalee has had to also confront changes in her relationships. She explains that the “hardest thing is friendship. Sometimes, I think I’m left out because I do different things than other people and the boys will sometimes make fun of me.” School work is also much harder now because when she reads, her eyes and neck move, causing her to lose her place. Her parents and teachers are working together to get creative with accommodations. Michelle adds, “She feels claustrophobic with all the tics. She tells me, ‘I feel trapped in my body.’ When it’s hard, we have a big cry, pray, and then we move on.”
Though life has changed for Novalee, she is the same bright and creative girl who loves shopping, singing, tumbling, drawing, and soccer. She is a blossoming songwriter, and she amazes her family with her worship songs. She was too sore for tumbling the first few months, but now she has achieved a major goal—a back handspring! She also blazes down the soccer field, scoring in every game.
Though working hard every day to control her tics, Novalee has accepted her difference and is proud to proclaim some of her favorite lyrics from The Greatest Showman, “I’m not scared to be seen, I make no apologies, this is me.” ■