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Tourette workshop to bring support, awareness

by Chris West
Public Relations
Starting school for many children is a frightful experience, but beginning school with the physical and social consequences of Tourette Syndrome (TS) is absolutely terrifying.

The Institute of Psychiatry (IOP) and the Department of Psychiatry and Behavioral Sciences are sponsoring a workshop on TS on Oct. 21 in the IOP auditorium. 

The workshop will focus on raising awareness of the condition and providing an environment for TS patients and their friends and families, to come together, ask questions of professionals and meet patients suffering from the same conditions and symptoms. 

Topics to be addressed are: the concerns of parents of children with the condition, Transcranial Magnetic Stimulation as an experimental treatment, testimonials of Tourette patients and issues surrounding the creation of a local association to lend support and networking to Tourette patients in the area.

Tourette Syndrome, a condition in which an individual experiences one or more involuntary verbal and/or motor “tics,” is seen primarily in Caucasian children with most symptoms presenting themselves between the ages of five and eight.

“The most difficult part of this condition is the age in which it occurs,” said Walter Hiott, M.D., workshop coordinator and collaborator. “At this point in a child’s life, the negative social effects of TS can be tremendous, especially with acceptance among their peers who don’t understand.”

Tics vary in type, frequency, and severity, they can be verbal, motor or some combination of the two in location. Single tics generally occur in bouts and are usually brief. They may also range in severity from minor and subtle, to multiple and severe.

“It is difficult to tell the what, when and why in the triggering of bouts,” Hiott said. “It's a crescendo/ decrescendo type of condition, with bouts of tics coming in waves. Sometimes moments of stress, anxiety, intense emotion and excitement can bring on a bout. Sometimes, just lying around in private can trigger one. They can appear for no reason at all.”

Tics are also diverse in where they occur, anatomically. Facial tics, such as rapid eye blinking or twitches of the mouth are common motor tics. Involuntary sounds, such as a constant clearing of the throat, sniffling, grunts and other indecipherable noises are common vocal tics.

Another little known facet of the condition is that after many weeks and months of experiencing a tic on a regular basis, the tic will disappear and lay dormant for some period of time. Then later, they resurface as before or as another tic in a different part of the body.

What TS is not, is the commonly stereotyped “cursing disease.”

The condition that many think is common among all TS sufferers—coprolalia, an involuntary outburst of some type of obscenity or vulgarity—is actually quite rare, occurring in only 10 to 15 percent of patients.

Coprolalia is extremely random in occurrence and usually out of context with the current conversation. 

A similar motor condition, copropraxia, causes sufferers to randomly exhibit obscene gestures. Copropraxia has a smaller percentage of occurrence than coprolalia.

Echolalia is another vocal tic in which words that are heard are repeated intermittently until something else takes its place or the bout ends. Occurrences are rare, but more often than coprolalia and to much different degrees.

“Current literature regarding prognosis suggests that TS has a rule of thirds,” Hiott said. “In a third of patients, the tics subside and may disappear entirely. Another third, may exhibit the same tics, but in a much milder form. And the last third will continue to exhibit the same tics from childhood, with a percentage of these actually worsening.”

With the little that is known about TS, the treatments of the condition are limited. Education,  counseling and medication are the main treatments of TS. The Federal Drug Administration has approved two drugs in the treatment of TS—Haldol and Orap. But these are often not used in first line treatment because of extreme side effects. The exceptions are in cases exhibiting severe tics or where other medical conditions are present.

Another method of treatment under investigation is Transcranial Magnetic Stimulation (TMS). Mark George, M.D., will be heading a presentation on the subject during the workshop. TMS works by sending a precise and controlled magnetic current into the brain via a hand-held coil that stimulates areas of the brain temporarily. TMS is being studied for potential effects on movement, memory, visual perception, speech, mood and in suppression of tics. 

Heidi Cohen, director of the Tourette Syndrome Association of Georgia and South Carolina, will address the creation of a local association for TS patients to network and gain support. 

“With the Internet being the main source of support, we would naturally like to see more of a presence of support here in the Lowcountry,” Hiott said.

Workshop presenters will also provide information for parents of a TS child and their options in enrolling that child in a school system. Areas of special accommodations for children with TS, information that parents should discuss with the school system and individual educational plans for TS patients that are in the best interest of the child, will also be discussed.

“This is important because a variety of other conditions are in one way or another connected to TS, such as Obsessive-Compulsive Disorder, Attention Deficit Disorder and depression. These all have an effect on school performance and can compound the effects of TS,” Hiott said.

Hiott attributes the misunderstanding, under- and misdiagnosis of TS to academic centers that “don’t teach a great deal about it. There are so few who have experience dealing with the condition that it is not passed on to other health care professionals. We try to grant a level of exposure to students here and we are lucky to have other physicians that feel comfortable in seeing patients with TS.”

The Tourette Syndrome Day workshop will be held Oct. 21 at 10 a.m. in the IOP Auditorium. The workshop fee is $10 per person and includes lunch and workshop materials. 

To register, mail a check to MUSC Institute of Psychiatry, Community and Professional Education, P.O. Box 250861, Charleston, SC 29425. Please include name, address and daytime phone number.