Taking on Tourette's: Families Reveal Their Personal Struggles

Fretwell's symptoms sometimes alienate her from her own family. "You cause a lot of problems. Money-wise, family-wise. You're a problem child," her sister said to her.

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. They have become so intense that she had to drop out of school this year.

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 Constantino said after the incident.

Even though there is no known cure for Tourette syndrome, many children 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.

Isabella's 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.

Though her tics remain as strong as ever, Isabella hasn't let her symptoms hold back her dreams. She pursued her passion for acting and was cast in a small feature film.

"What is so remarkable about [Isabella], is that she's so resilient," commented Mink. "She has some of the worst tics I've ever seen but she hasn't let it get in the way of living a happy and fulfilled life as a teen."

  • 1
  • |
  • 2
  • |
  • 3
  • |
  • 4
Join the Discussion
blog comments powered by Disqus
You Might Also Like...