Patient education: Tourette syndrome (The Basics)

What is Tourette syndrome? — Tourette syndrome is a rare disorder that causes people to make unusual movements or sounds, called "tics." Common examples of tics include blinking and throat clearing. People with the disorder have little or no control over their tics. Many people with Tourette syndrome have mild symptoms, but some have more severe ones.

The symptoms of Tourette syndrome usually start in children who are between 2 and 15 years old. In about half of children with Tourette syndrome, the tics go away by the time they turn 18. Tics that continue into adulthood gradually improve over time in many people. But in some people, the tics return later in life.

What are the symptoms of Tourette syndrome? — The symptoms include:

●Motor tics – These are tics that involve sudden, unusual movements. They can be mild (called "simple motor tics") or more extreme (called "complex motor tics"). Examples of motor tics include:

•Eye blinking

•Briefly making a face as if angry or in pain (called a "grimace")

•Shrugging the shoulders

•Jerking the head

•Walking in a strange way

•Kicking, jumping, or moving the body in odd ways

•Scratching

•Making obscene gestures

●Vocal tics – These are tics that involve unusual sounds or words, or phrases that don't make sense or seem odd. Examples include:

•Throat clearing, grunting, sniffing, or other noises

•Swearing

•Repeating words or phrases (including echoing what other people say)

People with Tourette syndrome often know that they are going to have a tic before it happens.

Is there a test for Tourette syndrome? — No. But your doctor or nurse should be able to tell if you or your child has it by learning about the symptoms. Most people with Tourette syndrome have a normal physical exam.

How are tics treated? — Children and adults with Tourette syndrome don't need medical treatment if their tics are mild. But it can help to talk with a counselor and learn about Tourette syndrome.

A person with Tourette syndrome might need treatment if the tics are causing problems with:

●Talking with other people

●Attending school or working at a job

●Doing everyday things such as bathing, dressing, and eating

A person might also need treatment if the tics are causing pain or injury.

Treatments for tics include:

●Habit reversal training – This treatment involves working with a therapist who teaches people with Tourette syndrome to recognize when they are about to have a tic. Then, the people train themselves to do a different movement that makes it hard to do the tic. This treatment is not available everywhere.

●Medicines – Certain medicines used to treat different mental health conditions can lower the number of tics a person has.

●Botulinum toxin (brand name: Botox) – This is a medicine that is given by injection. It works by blocking or calming the nerve signals that make the muscles jerk or twitch.

Does Tourette syndrome come with other problems? — It can. Many people with Tourette syndrome have related conditions, too. Examples include:

●Attention deficit hyperactivity disorder ("ADHD")

●Obsessive-compulsive disorder ("OCD")

●Anxiety

●Depression

●Problems with behavior, such as angry outbursts or aggression

●Problems with learning

●Sleep problems

Your doctor might ask about symptoms and behavior at home or school. This can help them figure out if you or your child might have any of these conditions. If so, there are treatments that can help.

How can I learn more about Tourette syndrome? — More information is available online from the following organizations:

●Tourette Association of America: www.tourette.org

●Tourette Canada: www.tourette.ca

●European Society for the Study of Tourette Syndrome: www.essts.org

●Tourette Syndrome Association of Australia Inc: www.tourette.org.au

It's also important to make sure that family, friends, teachers, and coworkers of people with Tourette syndrome learn about the disorder. This will help them understand what tics are and why the person might have trouble controlling their behaviors.