Tourette Syndrome (TS) is an inherited neurological disorder characterized by tics -- involuntary, rapid, sudden movements or vocalizations that occur repeatedly in the same way. This means that Tourette Syndrome is where there is a slight malfunction in the brain, like a machine that doesn't quite work right. There is no need to worry though, because all it causes is a person needs to make a sudden movement or sound, it is nothing to be ashamed of. The symptoms include:

1. Both multiple movement or speaking tics, although both may not happen at the same time;

2. Tics happening more than once in a single day (usually in short periods of time) nearly every day or occasionally throughout more than one year.

3. Occasional changes in the number of tics, how often the tics happen, the type of tic, the area where the tic is happening, and how severe the tic is. Symptoms can sometimes disappear for weeks or months at a time.

2. What causes Tourette Syndrome?

Nobody knows what causes Tourette Syndrome yet, but some research makes it look like the disorder is caused by strange activity of at least one chemical in the brain. This chemical is a neurotransmitter called dopamine. This chemical sends signals to the brain that makes the brain make the body move or make sounds. There may also be strange activity for the receptor of the signal which changes the message that dopamine sent it, causing a tic. Other neurotransmitters, such as, serotonin, may be involved as well.

3. What are the first symptoms to emerge in TS?

The most common first symptom is a facial tic like quickly blinking eyes or a twitching mouth. Involuntary sounds such as throat clearing and sniffing, or tics of the limbs may be initial signs. For a small amount of people, the disorder begins immediately with multiple movements and sounds.

4. How are tics classified?

There are two groups of tics and some examples are:

.There are many tics that can be seen in TS, and it is hard for some people to believe that the actions or sounds made by the person cannot be stopped.

5. Can/should tics be controlled?

Most people with TS do have some control over their symptoms. What most people don't understand is that by stopping the symptom it may only make a more intense outburst happen later in the day. Stopping a tic is like stopping a sneeze, it's very hard and even if you stop it it will come back stronger. People with TS often look for a place to be alone to let out thier tic, delaying them in school or work. Usually tics will happen more often when a person is stressed and happen less when a person is realaxed or focused on something, so remember not to worry too much and to relax.

6. Is bad language (coprolalia) a typical symptom of TS?

Definitely not! There are very few who have a tic which makes them say bad words or hurtful things, fewer than 15%. Even though movies and TV shows will show this symptom more than any other of TS it is very rare.

7. How is TS treated?

Most people with TS are not majorly held back by their tics and don't need medication. But there is medicine available to help control the symptoms when they get in the way of important things.

The amount of medicine taken is different for each person and must ONLY be decided by a doctor. The medicine is given in a small amount, with more given every now and then to see how much is best. Some of the unwanted reactions to medications are weight gain, muscle tightness, tiredness, constant movement and social removal, most of which can be reduced with specific medications. Some side effects such as depression can be fixed with a smaller amount of the medicine taken or a change of medication.

Other types of therapy may also be helpful. Psychotherapy and counseling can assist a person with TS and help his/her family deal with TS, and some behavior therapies can teach someone to change one tic for another that is more acceptable. Relaxing and/or advice from others may serve to help reduce stress reactions that cause tics to increase.

8. Is it important to treat Tourette Syndrome early?

Yes, especially when someone thinks the actions of a person are wierd, disruptive, and/or scary. It may also be good to see a therapist when a child is concerned if he or she will be accepted by their classmates, teachers, neighbors, or even strangers. The child may be threatened, kept out from activities, and prevented from enjoying normal relationships with other people. These difficulties may become greater during childhood. To avoid psychological harm, it's important to tell that it is TS and to treat it.

9. Do all people with TS have related behaviors in addition to tics?

No, but many do have one or more problems which may include:

Obsessions over thoughts which can become unwanted or annoying.

Behaviors that a person repeats because they feel like it has to be done many times or done a certain way until they are happy with it. 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." Repetitive copying and erasing of work in school can be quite disabling.

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 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 control over sudden actions may persist.

Learning Disabilities may include reading and writing difficulties, problems with mathematics, and perceptual problems.

Difficulties with impulse control which may result, in rare instances, in overly aggressive behaviors or socially inappropriate acts. Meaning a person may have a hard time stopping urges. Also, defiant and angry behaviors can occur.

Sleep Disorders are fairly common among people with TS. These include difficulty getting to sleep, often waking up, or walking or talking while asleep.

10. Do students with TS have special educational needs?

While most school children with TS have the same IQ range as the other students, many have special educational needs. Many may have some kind of learning problem. Learning problems, combined with attention deficits and the difficulty dealing with frequent tics, often make it so the child needs special educational assistance. The use of tape recorders, typewriters, or computers for reading and writing problems, un-timed exams (in a private room if sound tics are a problem), and permission to leave the classroom when tics become overwhelming are often helpful. Some children need additional accommodations in order to be successful in school.

When problems in school cannot be fixed the child may need to take an educational evaluation. If the child is identified as "other health impaired" the student will get and Individual Education Plan (IEP) which will help solve the problems. This can really help a person reduce the difficulties that are keeping him or her from doing well in school. If a child cannot learn in a public school then they may need to be sent to a school specially made for students like them or be home schooled.

Remember, each child's needs are specific to his/her situation and that accommodations for one child may not help another.

11. Is TS inherited?

Research says that TS is inherited causing different symptoms in different family members. A person with TS has a 50% chance to pass it to his or her children. But, even if it's passed it may not show itself as TS at all, it may show as a less severe disorder, or as obsessive compulsive disorder with no tics at all.

If the child is a boy they have a 75% greater chance of inheriting Ts than a girl. This doesn't mean a boy will inherit Ts, it just means a boy has a higher chance than a girl. Only about 10% of children who inherit the gene will need medical attention though. In some cases TS may not be inherited, and cases such as these are identified as sporadic TS. The cause in these instances is unknown.

12. Is there a cure?

Not yet.

13. Will it ever go away?

Many people experience less severe tics in their teenage years or early twenties. Most people with TS get better as they get older and as many as 1/3 of patients with TS experience no or almost no tics when they become adults.

14. How many people in the U.S. have TS?

Since many people with TS have yet to be diagnosed, there's no way to tell exactly how many. The official estimate by the National Institutes of Health is that 100,000 Americans have full-blown TS. Some studies think that the figure may be as high as one in two hundred if those with chronic multiple tics and/or temporary childhood tics are included in the count.

15. What is the history of TS?

In 1825 the first case of TS was reported in medical literature with a description of the Marquise de Dampierre, a noblewoman whose symptoms included involuntary tics of many parts of her body and various vocalizations including coprolalia (saying bad words) and echolalia (repeating what someone else says). Later, Dr. Georges Gilles de la Tourette, the French neurologist who had the disorder named after him, first described nine cases in 1885. Samuel Johnson, the lexicographer, and Andre Malraux, the French author, are among the famous people who are thought to have had TS.

16. What are scientists researching about TS?

Right now, scientists are studying how TS is passed from one person to the next. If they are able to figure out how TS is able to be passed from one person to the next then they may come up with a cure, let's hope they are able to succeed. At the same time they are studying to make new medications to help people deal with more severe tics.

17. What type of services are available for families?

In Pennsylvania, we have established 8 support groups spread throughout the state that allow families to exchange ideas and feelings about their common problems. Often family therapy is helpful. Parents of a child with TS have to recognize between understanding and overprotection. They are constantly faced with deciding whether or not certain actions are the expression of TS or just poor behavior. Parents then must determine the appropriate response. For socially unacceptable behavior, a child should be encouraged to control what he/she can whenever possible, and try to substitute what is more socially acceptable. Parents are urged to give their children with TS the opportunity for as much independence as possible, while gently but firmly limiting attempts by some children to use their symptoms to control those around them.

Pennsylvania residents may contact the Pennsylvania Tourette Syndrome Association, Inc. (PA-TSA) and register to receive advocacy and informative services.

The above questions and answers are intended to provide basic information about TS. They are not intended to, nor do they constitute medical advice. Readers are warned against changing medical schedules or life activities based on this information without first consulting a physician.

You should not rely on the information posted on this Web Site as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. PA-TSA strongly recommends that care and treatment decisions related to Tourette Syndrome and any other medical condition be made in consultation with a patient's physician or other qualified health care professionals who are familiar with the specific individual's health situation.