FREQUENTLY ASKED QUESTIONS ABOUT TOURETTE

What is Tourette Syndrome?

Tourette Syndrome (TS) is a neurological disorder characterized by repetitive, involuntary movements (tics) and vocalizations. Cases of TS range from mild to severe, with the majority falling into the mild category.

Who is affected?

TS affects people of all ethnic groups. Depending on the study, estimates of the number of people affected can range from 1/100 for milder cases to 1/1000 for more severe cases.

What are the symptoms of TS?

• both multiple motor and one or more vocal tics present at some time during the illness, although not necessarily simultaneously;

• the occurence of tics many times a day, nearly every day or intermittently throughout a span of at least one year;

• periodic changes in the number, frequency, type, and location of tics, and waxing and waning of their severity (symptoms can sometimes disappear for weeks or months);

• onset before the age of 18.

What are some examples of tics?

• simple motor tics - eye blinking, head jerking, shoulder shrugging, and facial grimacing.

• simple vocal tics - throat clearing, yelping and other noises, sniffing, and tongue clicking.

• complex motor tics - jumping, touching other people or things, smelling, twirling about, and only rarely, self-injurious actions including hitting and biting oneself.

• complex vocal tics - uttering words or phrases out of context, coprolalia (vocalizing socially unacceptable words - experienced by fewer than 15% of people with TS), echolalia (repeating a sound or phrase just heard), and pallilia (repeating oneself).

What are some of the causes of TS?

The best evidence suggests that there may be abnormalities in one or all of the following: brain regions such as the basal ganglia and frontal lobes; the circuits or nerves which interconnect these brain regions; or the neurochemicals upon which these nerve circuits depend.

Recent genetic studies indicate that several genes may be implicated and that environmental factors can affect the outcome. The gene or genes responsible for TS may be expressed as either TS, as a milder tic disorder, as obsessive compulsive symptom or may not be expressed at all. Males are 4 times as likely to express tic symptoms than females. Females are more likely to express obsessive compulsive sysmptoms.

How is TS diagnosed?

TS is a clinical diagnosis that must be made by a trained medical specialist through observation. No blood analysis or other type of neurological test exists to diagnose TS.

Correct diagnosis is sometimes delayed after the onset of symptoms because some physicians are unfamiliar with the disorder. And because tics can wax and wane in severity and can sometimes be suppressed, they are often absent during doctor visits. further complicating an accurate diagnosis.

What is the treatment for TS?

The majority of people with TS are not significantly disabled by their tics or behavioral symptoms, and so do not require medication. However, there are medications available to help control symptoms when they interfere with daily functioning. Dosages will vary for each person and must be gauged carefully by a doctor. A doctor will administer medicine in small doses and make gradual increases until there is a maximum reduction in symptoms with minimal side effects.

Other types of therapy may also be helpful. Psychotherapy, though it will not help with tics directly, may help the person with TS and his/her family better cope with the disorder. Some behavior therapies can teach the substitution of one tic for another that is more socially acceptable. Relaxation techniques and biofeedback may help to alleviate stress, which in turn can lead to a decrease in tic symptoms.

Is there a cure for TS?

There is presently no cure for TS, but many people experience marked improvement in their late teens or early twenties. Most people with TS get better, not worse, as they mature. In one longitudinal study of TS, nearly 50% of the children enrolled in the study were observed to be virtually tic free by age 18.

Do people with TS experience other medical problems?

Not all people with TS have associated disorders. However, many people with TS do experience additional problems, including:

• Obsessions and Compulsions - repetitive unwanted or bothersome thoughts, accompanied by ritualistic behaviors. Examples of compulsions include touching something until it feels "just right," washing hands repeatedly, or checking that a door is locked over and over.

• Attention Deficit Disorder - indications include difficulty concentrating, distractibility, failure to finish what is started, difficulty listening, and general fidgeting.

• Learning Difficulties - may include reading, writing, perceptual and math difficulties

• Problems with Impulse Control - may result, in rare instances, in overly aggressive and socially inappropriate behaviors.

• Sleep Disorders - include frequent awakenings or walking or talking in one's sleep.

Do students with TS Need Special Education?

Although many students with TS function well in the regular classroom, others may have special educational needs. Some students may require accomodations in the classroom like extra breaks or untimed exams, or they may require smaller or special classes, and in some cases, special schools. Information about students' rights is available from national TSA. National TSA also has a curriculum guide for educators as well as brochures to help the classroom teacher develop strategies for the student with TS. National TSA's website is www.tsa-usa.org.

FOR MORE DETAILED INFORMATION ABOUT TREATING AND COPING WITH TOURETTE SYNDROME, PLEASE VISIT THE WEBSITES LISTED ON OUR LINKS PAGE.