Effort launched to better serve patients with Tourette syndromeFeb. 9, 2017, 9:06 AM
Two neurologists are working to establish a multidisciplinary medical home at Vanderbilt University Medical Center (VUMC) for children and adults with Tourette syndrome.
A community meeting they’ve organized for March 4 is a first step toward a dedicated clinic to better serve the patients with the disorder who already come to Vanderbilt and to expand access to care for others. Once that clinic is up and running, they plan to work toward meeting the requirements to have it designated as a Tourette Association of America Center of Excellence.
One of the neurologists, Heather Riordan, M.D., came to Monroe Carell Jr. Children’s Hospital at Vanderbilt in October from a Center of Excellence at the Children’s Mercy Hospital in Kansas City, Missouri. There are currently seven hospitals and two regional consortiums in the country with this designation.
“Having everybody together at the same place creates a much better quality of care for these kids, who are absolutely delightful, but have a lot of different things that affect their lives,” Riordan said. “People think about tics when they talk about Tourette, but really that is only the tip of the iceberg. While movement and vocal tics are characteristic of Tourette, it is also associated with attention-deficit/hyperactivity disorder, obsessive-compulsive disorder and anxiety issues.”
It’s a condition that is often misunderstood and stigmatized. Launching a support group is one of the goals for the meeting, scheduled from 10 a.m. to noon, March 4, in the Monroe Carell Jr. Children’s Hospital at Vanderbilt theater, Room 2210.
“We want to know what would be most helpful for the patients and their families,” said David Isaacs, M.D., another neurologist who treats Tourette patients at Vanderbilt University Adult Hospital.
“These patients don’t have a medical home. We are trying to provide a place where all of their symptoms, tics and otherwise, can be taken into consideration.”
A comprehensive approach with treatment and support helps quell anxiety issues that can make tics more troublesome, Riordan said.
“Tourette syndrome has so many different manifestations, both in terms of tic and motor manifestations — also neuro-psychological manifestations — you really do need this broad approach to helping people,” Isaacs said.
The incidence rate for Tourette for children ages 6 to 17, including those undiagnosed, is estimated to be 1 in 162, Riordan said.
“I have had many patients who have had Tourette for years and been treated with Tourette medicine, but nobody has ever used that word with them,” she said. “Because of stigma, a lot of physicians are scared to use that word with patients and they say ‘these are tics’ and kind of brush over it, but never actually put a label on it.”
Movement tics can range from harmless eye blinking to repetitive head motions severe enough to cause whiplash injuries, while vocal tics vary from throat clearing to uttering swear words at inappropriate times.
However, even small tics can cause big problems for people, Riordan said, explaining how a child who rolls his eyes may be considered disrespectful in school.