Taking on Tourette: Families Reveal Their Personal Struggles

July 15, 2008— -- Nestled deep in the Finger Lakes region of New York State, there's a summer camp unlike any you've ever seen — or heard.

Known as "Camp Tic-a-Palooza" — a sly play on a disorder that has made the children here strangers in their own bodies — the camp provides a safe haven from the judgment of the outside world. Within minutes, the summer stillness erupts in an odd symphony of grunts, squeaks and screams, accompanied by a grimace and a twitch or two.

Even the strangest behaviors seem common, because all of the campers suffer from Tourette syndrome, a lifelong neurobiological disorder characterized by involuntary vocal and motor symptoms called tics. The National Institutes of Health estimates that one in 1,000 American children suffers from the disorder.

The range of tics — from constant eye-blinking, and finger tapping to barking and spitting — even astonishes those with the disorder. "I never knew people could have tics like that. That's really new to me and that's really cool," said Sid, 10, whose own symptoms include sticking out his middle finger.

Amanda Fretwell traveled all the way from Alabama accompanied by her menagerie of vocal tics. "I'll hiss at people, I'll bark at people, I'll roar at people," she explained. Fretwell is one of the four teenagers profiled by "Primetime," who documented their daily lives with Tourette in a video diary.

Normally Fretwell struggles to suppress her tics, but at camp — surrounded by others who share her disorder — she feels liberated. "I haven't ticked this much in a long time," confessed Amanda. "I can tic and not worry about being self-conscious about it."

Like a string of firecrackers, Fretwell's screams set off a chain reaction of tics in the other children, especially 12-year-old Devon, who starts barking uncontrollably. Soon the place swells in a crescendo of ticcing children. One boy, who has Tourette himself, is annoyed by the noise and demands that the screaming stop. His intolerance doesn't sit well with the other children, who feel the sting of Tourette both physically and socially every day.

Coping With Isolation

Back in Alabama, Fretwell is isolated by the strangeness of her disorder. While her shrieks even surprise others with Tourette, she is humiliated by her cursing tic, a rare but well known symptom. Less than 15 percent of all patients have this form, according to the Tourette Syndrome Association. "Just because I have TS doesn't make me a freak. It's just something I do," said Fretwell.

Even when she is interviewing her sister, in one of Fretwell's video diary entries, her raw and even profane tic kicks in.

"Boobies, boobies, boobies" she exclaimed. According to Fretwell, the sexual imagery comes from her mind playing an instantaneous sort of six degrees game.

"There is a person wearing a short skirt in my class and I will think, 'Short skirt,' then, 'Lot of skin showing,' then I'll think 'Naked women,' then 'Whore' will come out," she explained.

According to Dr. Jonathan Mink, a child neurologist, people with socially inappropriate vocal tics are most likely to feel a stronger urge to say them in the worst situations.

"They know this is a setting like a church where I shouldn't do it — it's taboo here — but for some reason that's where it's the worst. 'I've got to do it,'" Mink said.

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.

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.

Reluctantly, Devon made her way to school and agreed to give a brief presentation on Tourette to her sixth grade classmates. Unexpectedly, the presentation also became a memorable show-and-tell, as Devon began to bark and convulse uncontrollably.

At lunch, a few of her classmates commended her bravery but also confirmed the biggest fear of every Tourette patient — social rejection. "It's hard to make friends when people are already making fun of you," said one boy.

By the end of the day, Devon's mood darkened. She vowed never to return to public school again. At home, her tears turned into a tantrum. She even hung up the phone on her father, who called to check in.

Moira Renoldson, Devon's mother, reached the end of her patience. "This is typical [behavior] of Devon. I don't know if it is a symptom of the Tourette or if it's just an 11-year-old attitude," Moira said. That is an agonizing dilemma every Tourette parent must face.

'I'm Emotionally Tired'

On an alpaca farm in rural New York, the body of a young teenager never stops moving. Despite her more subtle symptoms, Nikki Blowers' rebellious body exhausts her, exacting a punishing emotional toll.

"I can't behave as normal kid. I can't ride my bike. Go outside, I'm so emotionally tired," cried Nikki in a video diary. For Nikki Blowers' family, these emotional episodes follow a familiar path — euphoria followed by frustration, which sometimes end in a meltdown. These episodes are the emotional counterparts to motor and vocal tics.

Nikki claims she has no recollection of these rage episodes where she snaps at her parents, yells at her brother and rolls around on the floor. But for her family they are hard to forget.

"It really tough some days having a TS kid," said Nikki's mom, Mary. "It's an emotional rollercoaster and some days you think, 'I just can't take it anymore.' You just want to walk away."

"A good percentage of kids with Tourette have rage episodes, like a toddler's temper tantrums when something triggers this uncontrollable anger that lasts for 20 to 40 minutes and it's over," said Mink, who treats Nikki. "It's not willful or intentional or calculated behavior. Most of these kids feel remorseful."

The one thing, the four brave girls who lifted the veil on living with Tourette syndrome want you to know is if you look past the screaming, barking, swearing, and twitching and into their souls you'll meet some remarkable children that at their core are just like everyone else.

Fortunately for those with Tourette syndrome, studies suggest that about one-third will outgrow their tics completely and another one-third will have them severely diminished to point where they no longer seek treatment, Mink said. The remainder will still have to cope with the symptoms. For more information on Tourette, please contact the National Tourette Syndrome Association.