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What Is It?
Tourette syndrome (TS) is a problem of the nervous system that was first described by the French neurologist, Gilles de la Tourette, more than 125 years ago.
The major symptom is tics. Tics are sudden, brief, involuntary or semi-voluntary movements (motor tics) or sounds (vocal tics).
To make a diagnosis of TS, a person must have many motor tics and at least one vocal tic, almost every day for more than a year.
A person who has a tic does not necessarily have TS. Tics are, in fact, relatively common. They occur most often from age 9 to 11, in up to 10% of children. In contrast, the full Tourette syndrome is much less common, occurring in less than 1%. Boys are affected three times more often than girls. TS is also more common in children with autism or Asperger syndrome.
Tourette syndrome has a strong genetic component, although the genetic mechanisms are not yet known. As with many other illnesses, TS will probably not turn out to be a single condition with one cause. Rather, it is likely to have multiple causes.
If someone has TS, the chance that someone else in the immediate family has tics is about 25%. Up to 90% of identical twins are affected. Environmental factors probably play a role in the development of TS (for example, stress or infection), but these causes are not well defined.
TS often is accompanied by other behavioral or emotional problems, such as attention deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder, learning difficulties, sleep problems, depression and anxiety.
Tics are involuntary and usually sudden, rapid and repetitive. They appear in a variety of forms. No two people with Tourette syndrome have the same symptoms.
Tics become worse with anxiety, excitement, anger or fatigue and can get better during absorbing activities or sleep. Some people with TS describe an urge or warning sign before a tic. They may be able to suppress tics briefly.
Tics can be either simple or complex.
Simple motor tics. These tics involve just one muscle group. Examples are an eye blink, a head jerk or a shoulder shrug.
Complex motor tics. These tics use more muscles groups. The face or body may contort. The person may touch someone, sniff, jump or make an obscene gesture.
Sometimes a person will make a voluntary movement to cover up the tic, for example, a head thrust followed by smoothing the hair. Simple vocal tics include such sounds as grunting, barking, yelping and throat clearing.
During complex vocal tics, a person with TS may repeat his or her own words, repeat another person's words, or say obscene words or phrases. When obscenity is part of the tic, it is quite upsetting, but this probably occurs in no more than 10% of cases.
The most dramatic symptoms are easy to notice, but the disorder can be difficult to recognize. People with mild to moderate tics may be too embarrassed to discuss their problems. Parents and teachers usually pay more attention to behavior, learning and attention problems than to tics. Also, sometimes tics are mistaken for other medical problems. For example, people might consult an allergist for sniffling or an eye doctor for unusual eye movements.
The disorder is diagnosed by observing the tics. If they do not occur frequently enough for a doctor to notice them during a routine visit, a family member or friend needs to describe them. A video can be very helpful. Sometimes, to help define the problem, a doctor asks a family member to fill out a questionnaire.
There is no blood test for Tourette syndrome. A physical examination and X-rays are usually normal. A physician may also look for other causes of tics, such as infection, medications or head injury.
Tourette syndrome is diagnosed when:
The person has multiple motor tics and one or more vocal tics.
Tics occur most days for at least one year.
Symptoms began before age 18.
The tics are not caused by another illness, a substance or a medication.
The doctor also will want to know about the impact of the tics on daily life and about other problems that commonly occur with TS, such as obsessions, compulsions, attention and learning problems, anxiety, and changes in mood.
The symptoms of Tourette syndrome vary widely over time. No one can predict how long the illness will last in any one person.
On average, the first tics begin around age 7 and usually involve the eyes or face – eye blinking, grimacing, clearing the throat or sniffling. Motor tics usually come on first, with vocal tics starting later. An intense period of tic activity often occurs from about age 8 to age 12. Even without medication treatment, the severity usually decreases through the teen years and may disappear by the early 20s. Problems with attention and obsessive-compulsive behaviors can continue or become more obvious in adulthood. Even children with the most severe tics may have good outcomes.
Tourette syndrome cannot be prevented, but early detection and treatment can reduce the severity of the tics and prevent many of the life problems that are caused by the illness.
The best treatment combines several approaches. The goal is to suppress tics and to identify and address related problems.
Education and support
Clinicians first will teach a person with TS, as well as family members, about the natural course of the disorder. Tics most likely will decrease in intensity and frequency as time passes. With proper treatment, tics need not impair life at school, at work or in relationships.
Self-help groups can provide support and education. Individual psychotherapy can help a person with TS cope with painful interpersonal problems and feelings of embarrassment, low self-esteem and self-criticism. A therapist can help parents support their child's efforts to control unwanted behaviors.
Similar efforts may be needed at the child's school. With the family's permission, education and practical support may be provided to school administrators, teachers and peers.
The severity of tics often can be reduced with medications, behavior therapy or both.
Behavior therapy can be used alone or with medication. One technique that has been shown to be effective is called habit-reversal training. The therapist teaches the person to use a specific muscle movement or behavior to compete with the tic. Other common behavioral techniques are positive reinforcement, relaxation training and self-monitoring, in which the person learns when tics are most likely to occur.
Drug treatment cannot eliminate tics completely, so the goal is to reduce tics to a manageable level so they cause less distress and interfere less with functioning.
Doctors generally prescribe drugs with fewer side effects first. Examples include clonidine (Catapres), which is more often used to treat high blood pressure and the antianxiety drug, clonazepam (Klonopin). More recently, the antiseizure medication, topiramate (Topamax) has been used to treat TS. Unfortunately, these drugs are not quite as effective as the second line drugs, a class of medications known as antipsychotic drugs. Antipsychotics do have more side effects.
Older antipsychotics, such as haloperidol (Haldol), are proven effective when given in low doses. Side effects include sedation, weight gain, dry mouth and muscle stiffness. Newer antipsychotics have recently been shown to be effective in some patients. They may not be quite as effective as the older antipsychotics, but the side effects may be easier to tolerate. These medications include aripiprazole (Abilify), risperidone (Risperdal), olanzapine (Zyprexa), ziprasidone (Geodon) and quetiapine (Seroquel).
Since every person with tics is a little different, it may be necessary to try a number of different medications before finding the one that works best and has the fewest side effects.
For the most severe cases that don't respond to other treatments, researchers have treated TS patients using deep brain stimulation (DBS), a technique that has been effective for other movement disorders. This treatment involves surgery to place small electrodes into brain areas thought to be involved in generating TS tics. It is still considered experimental in the treatment of Tourette Syndrome.
Treating other disorders
Seek treatment for other psychiatric disorders when they appear. The most common related disorders are ADHD and obsessive-compulsive disorder. TS symptoms may improve with treatment for learning problems, relationship problems, migraine headaches, depression or anxiety.
When To Call a Professional
Call your doctor or your child's pediatrician if involuntary movements or sounds occur for more than a few weeks or months. Your doctor may refer you to a specialist if tics are very frequent or severe, or if there are other associated emotional or behavior problems.
Most people with TS experience significant improvement in their late teens or early 20s. Some associated problems, such as obsessive-compulsive disorder and attention problems, can persist into adulthood and require long-term treatment.
Tourette Syndrome Association
42-40 Bell Blvd.
Bayside, NY 11361