http://www.memphisdailynews.com/news/2014/oct/14/tourette-help/

 

Tourette Help

UTHSC clinical study offers hope for Tourette symptoms

By Don Wade

 

 

Dr. Tim Hottell, dean of the College of Dentistry at the University of Tennessee Health Science Center, holds an experimental mouthguard designed to assist patients with Tourette syndrome mitigate their tics.

Craig Carton, who is co-host of WFAN’s morning show, “Boomer & Carton,” in New York, is comfortable with that format in that setting.

But as someone who has Tourette syndrome, and who has two children with it, he is all about answers.

“We don’t even know what causes it,” Carton, 45, said.

Answering that and finding a cure may be long-term projects. In the short term, Carton is encouraged that nonprofit TicTocStop, which he founded in 2013, can help. In its first year, the organization funded a pilot study that ultimately demonstrated the TicTocStop oral appliance lowered the frequency and severity of vocal and motor tics by 65 percent.

“We went into the original study with fingers crossed that this concept we bought into actually would work,” he said. “We were thrilled when the results came back.”

That study, Carton said, involved a small sample size of people with Tourette syndrome and was not in a formal clinical setting. Now, Carton’s TicTocStop has provided $340,000 for a clinical study that will enroll 65 people (adults and children) who suffer from either simple or complex tics. Each participant in the study will be fitted with a specially modified oral appliance, similar to a modified mouth guard for lower teeth. The study will then attempt to assess whether the appliance lessens the severity and frequency of patients’ symptoms.

“This is the first time in medical history that a multisite study of this type has been done,” said Dr. Timothy L. Hottel, dean of the College of Dentistry at the University of Tennessee Health Science Center and the chief investigator for the study. “This device may have the potential to help tens of thousands of people who suffer from motor and vocal tics.”

Tourette syndrome is a neurological disorder characterized by “repetitive, stereotyped, involuntary movements and vocalizations called tics,” according to the National Institute of Neurological Disorders and Stroke.

Other well-known people who have had Tourette symptoms include Tim Howard, goalkeeper for the United States national soccer team; actor and comedian Dan Ackroyd; and former big-league baseball player Jim Eisenreich.

The disorder is named after a French neurologist, Dr. Georges Gilles de la Tourette. He first described the condition in 1885 in an 86-year-old French noblewoman.

Early symptoms of Tourette syndrome, however, are usually first noticed in childhood. The average age of onset ranges from 3 to 9 years old. Eisenreich had early symptoms, but was not diagnosed until he started playing professional baseball. Carton says, looking back, he had symptoms early in life; he was not diagnosed until age 30.

 

 

Dr. Tim Hottell, dean of the College of Dentistry at the University of Tennessee Health Science Center, holds an experimental mouthguard designed to assist patients with Tourette syndrome mitigate their tics. 

(Daily News/Andrew J. Breig)

All ethnic groups are affected by Tourette syndrome, but males are affected about three to four times more often than females. It is estimated that 200,000 Americans have the most severe form of Tourette syndrome and that as many as one in 100 have milder and less complex symptoms.

Simple motor tics are sudden, brief, repetitive movements that involve a limited number of muscle groups. Common simple tics include eye blinking, facial grimacing, shoulder shrugging, and head or shoulder jerking. Simple vocalizations include repetitive throat clearing, sniffing, snorting, grunting or barking.

Complex tics involve several muscle groups and the tics are distinct, coordinated patterns of movements. Facial grimacing, for example, might be combined with a head twist or a shoulder shrug. More complex vocal tics also could include words or phrases. They may appear purposeful, with the person touching objects, jumping, bending or twisting.

The most dramatic and disabling tics include motor movements that can include self-harm, such as punching oneself, swearing and speaking inappropriately, or repeating the words and phrases of others. Tics are often worse with excitement or anxiety and better during calm, focused activities.

Carton’s radio show with former NFL quarterback Boomer Esiason is also telecast on the CBS Sports Network. Carton’s symptoms are generally under control, but sudden movements caught on camera have not created any issues. The audience, he says, always has been supportive.

“I’m very honest and open about having it,” Carton said.

Carton’s 14-year-old daughter has seen her symptoms dramatically improve with age and medication. His 12-year-old son will, at times, show minimal effects from Tourette syndrome and at other times have severe symptoms.

“It waxes and wanes and we don’t know why,” Carton said of Tourette syndrome symptoms in general. “My son, he’s been all over the board. He’s been a very willing and brave face of Tourette’s here in the Northeast.”

The new study being led by Hottel will run through January. Children ages 7 to 18 and adults 18 and older will participate. Carton understands there is a “long way to go” in terms of finding a cure, but he is optimistic that the study will help bring real-life, day-to-day, improved quality of life for those with Tourette syndrome.

“It’d be a major game-changer,” he said. “We’re closer than ever before to having a solution for (symptom management) that isn’t pharmaceutical-based and that won’t turn your kids into zombies.”

 

 

A Football Game with Craig Carton

RVC residents create fundraiser for Tourette Syndrome sufferers

By Alex Costello

 

Rockville Centre resident Daniel Fetner is working with Craig Carton of the “Boomer and Carton” show to help raise money for children suffering from Tourette Syndrome.

Fetner works with Carton’s charity, Tic Toc Stop, which works to raise money for research for Tourette Syndrome, which is a condition that causes people to make sudden, uncontrollable movements or sounds commonly called “tics.” Fetner is part of the “Next Generation Committee” and, along with other members, has created an event to help raise money for Camp Carton — a new summer camp for kids that suffer from Tourette Syndrome.

“All the money for our event is going toward Camp Carton,” Fetner said. “It’s a sleep-away camp for kids ages 9 to 15 with Tourette Syndrome. Last summer, it was only a one-week camp and it had about 30 to 35 kids.

Next summer, we’re looking to extend it to a two-week camp and include close to 50 campers.”

There are about 20 members on the Next Generation Committee with Fetner, including fellow Rockville Centre residents Max Mandinach and Greg Girasole, that all worked together to come up with the event.

They’re hosting a viewing party for the Jets v. Patriots game at Galway Pub in Manhattan on Oct. 16. Participants get food and an open bar for three hours, plus entries for raffle prizes, including a grand prize of a trip to the Boomer and Carton show.

Carton will also be at the event, offering his unique brand of commentary during the game.

All of the proceeds are going to Camp Carton. “Many of the kids are uncomfortable because they stand out because of these tics that they have,” Fetner said. “They’re always very self-conscious. And at this camp, they can just be themselves, because everyone is in the same boat.”

Tickets for the evening are available on the Tic Toc Stop website under the “events” category.

Visit www.tictocstop.com for more information.