Taking on Tourette: Families Reveal Their Personal Struggles

Trying to Beat the Tics

To overcome her tics, she decided to try a drastic procedure — Botox. Botox is injected into her vocal cords in an attempt to freeze them, preventing her from being able to do her tic.

Preliminary clinical trials of the treatment have proven successful, with up to 80 percent of patients experiencing a reduction in symptoms, according to a study conducted by the Baylor College of Medicine. Even though Fretwell attempted the procedure six times, the tics immediately came roaring back.

Like others with Tourette, 13-year-old Isabella Constantino has symptoms that mysteriously rise and fall in frequency and severity. Her self-injurious tics can seem so overwhelming that people sometimes overlook the sweet spirit within her. She loves to sing, dance and write poetry and dreams of being an actress.

But each morning begins with a bone-rattling jolt. "Since fourth [grade] I've had this horrible jerking," said Isabella while ticcing. "This is worse has ever been. But I am sort of handling it."

Her seizure-like tics are complicated by obsessive compulsive disorder, a shadow companion of Tourette that occurs in as many as 50 percent of patients. In her case, when something touches her, she has to touch it back.

Between her compulsions and her tics, even simple tasks turn into time consuming ordeals. Breakfast is a staggering undertaking. "My OCD makes me toss a plate up and down. I can't sit in a chair because my knees may hit the table. I had to bang my head as hard as I could against a hard surface. If something didn't feel right I had to punish it by like having to hit it," explained Isabella as she continuously stabbed a plate of pancakes.

One morning, Isabella refused to grab a spoon from a drawer, fearing it would trigger her OCD. Her mother insisted that she try, unleashing her compulsion to touch back. First she banged the spoon against the counter, and then slammed the drawer several times before striking herself with the object. Her mother watched in horror, wanting to help but fearing that she would create a crutch for her daughter.

"I feel like I have to make sure she comes out of it an independent kid," Isabella's mother Merry after said the incident.

Even though there is no known cure for Tourette syndrome, many children do take medicine to try and help stabilize their tics. Isabella takes a total of nine pills a day. However, there are many side effects, including massive weight gain, and their effectiveness varies with each child.

Her mother — desperate for even partial relief of her daughter's symptoms — has turned to holistic treatments to supplement the medication, including the nicotine patch, allergy shots and a gluten-free diet. So far, the alternative remedies have not been successful.

Struggling to Fit In

Dealing with Tourette within your family and in the privacy of your own home is rough enough, but imagine coping with the disorder in a public school classroom where even the average child struggles not to stand out.

Devon Rennoldson, 12, whose symptoms include barking, convulsing and even falling down, has been home-schooled for the past three years, but now she is preparing to return to public school. The night before her first day, a nervous Devon stayed up half the night ticcing. The symptoms continued throughout the morning, as stress is often a trigger for Tourette.