Frequently Asked Questions and Answers about Tourette Syndrome
Q. What is Tourette Syndrome?
A. Tourette Syndrome (TS) is a neurological disorder characterized by tics -- involuntary, rapid, sudden movements or vocalizations that occur repeatedly in the same way.
The symptoms include:
1.Both multiple motor and one or more vocal tics present at some time during the illness - although not necessarily simultaneously;
2.The occurrence of tics many times a day (usually in bouts) nearly every day or intermittently throughout a span of more than one year;
3.Periodic changes in the number, frequency, type and location of the tics, and in the waxing and waning of their severity. Symptoms can sometimes disappear for weeks or months at a time.
4.Onset before the age of 18.
The term, "involuntary," used to describe TS tics is sometimes confusing since it is known that most people with TS do have some control over their symptoms. What is not recognized is that the control, which can be exercised anywhere from seconds to hours at a time, may merely postpone more severe outbursts of symptoms. Tics are experienced as irresistible and (as the
urge to sneeze) eventually must be expressed. People with TS often seek a secluded spot to release their symptoms after delaying them in school or at work. Typically, tics increase as a result of tension or stress, and decrease with relaxation or concentration on an absorbing task.
Q. How would a typical case of TS be described?
A. The term typical cannot be applied to TS. The expression of symptoms covers a spectrum from very mild to quite severe. However, the majority of cases are in the mild category.
Q. What causes the symptoms?
A. The cause has not been established, although current research presents considerable evidence that the disorder stems from the abnormal metabolism of several brain chemicals (neurotransmitters) such as dopamine and serotonin.
Q. How is TS diagnosed?
A. A diagnosis is made by observing symptoms and by evaluating the history of their onset. No blood analysis or other types of neurological tests exist to diagnose TS. However, some physicians may wish to order an EEG, MRI, CAT scan, or certain blood tests to rule out other ailments that might be confused with TS.
Q. What are the first symptoms?
A. The most common first symptom is a facial tic such as rapidly blinking eyes or twitches of the mouth. However, involuntary sounds such as throat clearing and sniffing, or tics of the limbs may be initial signs.
Q. How are tics classified?
A. There are two categories of tics: motor and vocal. Both of these are then subdivided into simple and complex.
Motor-- Eye blinking, head jerking, shoulder shrugging and facial grimacing.
Vocal-- Throat clearing, yelping and other noises, sniffing and tongue clicking.
Motor-- Jumping, touching other people or things, smelling, twirling about, and only rarely self-injurious actions including hitting or biting oneself.
Vocal-- Uttering words or phrases out of context and coprolalia (vocalizing socially unacceptable words).
The range of tics is very broad. Some symptoms are often so complex that family members, friends, teachers and employers may find it hard to believe that the movements and vocalizations are involuntary.
Q. How is TS treated?
A. The majority of people with TS are not significantly disabled by their tics or behavioral symptoms, and therefore do not require medication. However, there are medications available to help control the symptoms when they interfere with functioning. The drugs include haloperidol (Haldol), clonidine (Catapres), pimozide (Orap), fluphenazine (Prolixin, Permitil), and clonazepam (Klonopin). Stimulants such as Ritalin, Cylert, and Dexedrine that are prescribed for ADHD may increase tics. Their use is controversial. For obsessive compulsive traits that interfere significantly with daily functioning, fluoxetine (Prozac), clomipramine (Anafranil), sertraline (Zoloft), fluvoxamine (Luvox) and paroxetine (Paxil) are prescribed. Risperidone
(Risperdal) is a newer medication that is also being prescribed.
Dosages which achieve maximum control of symptoms vary for each patient and must be gauged carefully by a doctor. The medicine is administered in small doses with gradual increases to the point where there is maximum alleviation of symptoms with minimal side effects. Some of the undesirable reactions to medications are weight gain, muscular rigidity, fatigue,
motor restlessness and social withdrawal, most of which can be reduced with specific medications. Side effects such as depression and cognitive impairment can be alleviated with dosage reduction or a change of medication.
Other types of therapy may also be helpful. Psychotherapy can assist a person with TS and help his/her family cope, and some behavior therapies can teach the substitution of one tic for another that is more acceptable. The use of relaxation techniques, biofeedback and exercise can reduce the stress that often exacerbates tic symptoms.
Q. Is it important to receive a TS diagnosis early in life?
A. Yes, especially in those instances when the symptoms are viewed by some people as bizarre, disruptive and frightening. Sometimes TS symptoms provoke ridicule and rejection by peers, neighbors, teachers and even casual observers. Parents may be overwhelmed by the strangeness of their child's behavior. The child may be threatened, excluded from activities and
prevented from enjoying normal interpersonal relationships. These difficulties may become greater during adolescence -- an especially trying period for young people and even more so for a person coping with a neurological problem. To avoid psychological harm, early diagnosis and
treatment are crucial. Moreover, in more serious cases, it is possible to control the symptoms with medication.
Q. Do all people with TS have associated behaviors in addition to tics?
A. No, but many do have one or more additional problems which may include:
- Obsessions which consist of repetitive unwanted or bothersome thoughts.
- Compulsions and Ritualistic Behaviors are when a person feels that something must be done over and over and/or in a certain way. Examples include touching an object with one hand after touching it with the other hand to "even things up" or repeatedly checking to see that the flame
on the stove is turned off. Children sometimes beg their parents to repeat a sentence many times until it "sounds right."
- Attention Deficit Disorder with or without Hyperactivity (ADD or ADHD) occurs in many people with TS. Children may show signs of hyperactivity before TS symptoms appear. Indications of ADHD may include: difficulty with concentration; failing to finish what is started; not listening; being easily distracted; often acting before thinking; shifting constantly from one activity to another; needing a great deal of supervision; and general fidgeting. Adults too may exhibit signs of ADHD such as overly impulsive behavior and concentration difficulties and the need to move constantly. ADD without hyperactivity includes all of the above symptoms except for the high
level of activity. As children with ADHD mature, the need to move is more likely to be expressed by restless, fidgety behavior. Difficulties with concentration and poor impulse control persist.
- Learning Disabilities may include reading and writing difficulties, arithmetic disorders and perceptual problems.
- Difficulties with impulse control which may result, in rare instances, in overly aggressive behaviors or socially inappropriate acts. Also, defiant and angry behaviors can occur.
- Sleep Disorders are fairly common among people with TS. These include frequent awakenings or walking or talking in one's sleep.
Q. Do students with TS have special educational needs?
A. While school children with TS as a group have the same IQ range as the population at large, many have special educational needs. It is estimated that many may have some kind of learning problem. That condition, combined with attention deficits and the problems inherent in dealing with frequent tics, often call for special educational assistance. The use of tape recorders,
typewriters, or computers for reading and writing problems, untimed exams (in a private room if vocal tics are a problem), and permission to leave the classroom when tics become overwhelming are often helpful. Some children need extra help such as access to tutoring in a resource room.
When difficulties in school cannot be resolved, an educational evaluation may be indicated. A resulting identification as "other health impaired" under federal law will entitle the student to an Individual Education Plan (IEP) which addresses specific educational problems in school. Such
an approach can significantly reduce the learning difficulties that prevent the young person from performing at his/her potential. The child who cannot be adequately educated in a public school with special services geared to his/her individual needs may be best served by a special school.
Q. Is TS inherited?
A. Genetic studies indicate that TS is inherited as a dominant gene (or genes) causing different symptoms in different family members. A person with TS has about a 50% chance of passing the gene to one of his/her children with each separate pregnancy. However, that genetic predisposition may express itself as TS, as a milder tic disorder or as obsessive compulsive
symptoms with no tics at all. It is known that a higher than normal incidence of milder tic disorders and obsessive compulsive behaviors occurs in the families of TS patients.
The sex of the child also influences the genetic expression of the condition. The chance that the gene-carrying child of a person with TS will have symptoms is at least three to four times higher for a son than for a daughter. Yet only about 10% of the children who inherit the genetic predisposition will have symptoms severe enough to ever require medical attention. In some
cases TS may not be inherited, and is identified. Those cases are called sporadic TS and the cause is unknown.
Q. Is there a cure?
A. Not yet.
Q. Is there ever a remission?
A. Many people experience marked improvement in their late teens or early twenties. Most people with TS get better, not worse, as they mature, and those diagnosed with TS have a normal life span. As many as 1/3 of patients experience remission of tic symptoms in adulthood.
Q. How many people in the U.S. have TS?
A. Since many people with TS have yet to be diagnosed, there are no absolute figures. The official estimate by the National Institutes of Health is that 100,000 Americans have full-blown TS. Some genetic studies suggest that the figure may be as high as one in two hundred if those with chronic multiple tics and/or transient childhood tics are included in the count.
The Tourette Syndrome Association has an extensive Catalog of Publications and Videos that details many of the topics touched upon in these FAQs.