What is Tourette Syndrome?

Tourette Syndrome (TS) is a neurological condition that causes children, teens, and adults to make sounds and movements that they dont want to make and cannot control. These sounds and movements are called tics.

There are two kinds of tics motor and vocal. Some common motor tics are eye blinking, facial grimacing, jaw movements, head bobbing/jerking, shoulder shrugging, neck stretching, and arm jerking. Some motor tics are more complicated and can include a combination of tics perhaps a head jerk, a shoulder shrug and a facial grimace, or movements that look like they have some purpose like hopping, twirling or jumping.

Some common vocal tics are sniffing, throat clearing, grunting, hooting and shouts. Some vocal tics are more complicated and can include words or phrases. Often these words or phrases dont sound like they are a part of a conversation the words are barked or grunted and will often appear to be inappropriate. In a minority of cases the words are profane (ie., swear words, ethnic slurs and other socially unacceptable words or phrases).

Symptoms of Tourette Syndrome include: atleasttwomotorticsandatleastonevocaltic ticspersistformorethanoneyear ticsbeganbeforetheageof18years

TS is a neurological condition, not bad behavior or the fault of the parents. Kids who have tics need to see a doctor and not be punished for the tics that they cannot control.

Tics get worse when a child is excited (like at Disneyland) or stressed (like before a test), and lessen when doing a calm activity. Some kids can hold their tics back for a bit, but they cant really stop them from occuring.

Other problems can come with TS. The more common ones are difficulty concentrating in school, overactivity, problems with learning, having to do things a certain way, anxiety and mood problems.

The good news is that kids and adults with TS are just as smart as anyone else, and people with TS live as long as anyone else.

What causes TS?Its complicated and no one knows for sure, but scientists think that TS is caused by problems in one or more parts of the brain.

How is TS diagnosed?A doctor diagnoses TS by seeing the patients tics or by hearing about the tics from the parent or the child. There is no test to confirm a diagnosis of TS. Some doctors will order tests to rule out other conditions that might be confused with TS.

Do all people with TS have other problems in addition to tics?

No, but the most common associated problem areas are:

ADHD Problems with concentrating, hyperactivity and poor impulse control. Kids may show signs of ADHD before tics first appear.

Learning difficulties problems reading, writing or doing math, and perceptual difficulties. These problems have nothing to do with intelligence levels.

Behavior and emotion control problems aggression, anger, defiance or socially inappropriate acts.

Anxiety excessive worries or fearfulness, including separation anxiety, or excessive shyness.

OCD repetitive, unwanted or intrusive thoughts. There are many types of obsessive thoughts, including excessive concerns about doing it just right, and intrusive religious, sexual or aggressive thoughts.

Unwanted behaviors a person feels must be performed over and over and/or in a certain way. Examples include doing something until it appears or feels just right or evening-up, touching things that are forbidden or dangerous even though you dont want to, intrusive unwanted sexual or religious thoughts, checking many times that a stove or iron is turned off or a door locked.

Mood problems periods of depression or elevated mood (mania) that result in a change in behavior and are a significant change from your childs usual self.

Social developmental disorders when a child has trouble getting along or keeping up with the other kids at school.

Sleeping problems difficulty falling or remaining asleep, bedwetting, walking or talking while asleep.

How is TS treated?Most of the time, tic symptoms are mild and dont require medicine. When tics become too much to handle, medicine may be considered. Finding the right dose that helps, but doesnt cause side effects, is something that requires some patience.

Doctors usually start with a small amount of a medicine and then increase it over a few days or weeks. Doctors watch for side effects of medicine (such as sleepiness, restlessness, weight gain and behavior changes), to make sure a patient can handle the medicine. Sometimes the doctors will treat the other problems first, which happens when the other problems are worse than the tics.

How are the other problems treated?

There are several medicines to treat the other problems.

Problems with attention, impulsivity, hyperactivity and OCD can really cause problems for school aged children. Medicine may be needed. The medication treatment of choice for these problems is stimulant medication. Methylphenidate and dextro-amphetamine are the generic names of these medicines. While studies show that these medicines dont make tics worse more often than a placebo pill, some patients tics might get worse and become alarming. Also the product information for these medicines have warnings about using these medications in kids with tics, even though the scientific evidence does not support such claims. That said, some individuals may get worse or start to have tics on these medicines. The explanation as for

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why this happens is complicated. Since tics go up and down on their own, sometimes when tics get worse on a medicine it is just a coincidence. It is very important to talk with your doctor before taking stimulants. Make sure your doctor answers all your questions.

Antidepressant medicines may be prescribed for repetitive thoughts and behaviors, anxiety and depression symptoms that interfere with daily functioning.

Do students with TS have special educational needs?People with TS are as intelligent as those in the general population, but many have special educational needs. Tics, ADHD, learning disabilities, disruptive behavior, anxiety and mood disorders can all interfere with learning. Treatment to reduce these symptoms or accommodations to minimize the effects of the symptoms can help to improve the educational results of people with TS. Those with specific learning problems can often be helped by the use of specialized educational techniques that fit the learning profile of the child.

When school problems cannot be resolved, an educational evaluation may be needed. A student who is identified as other health impaired under federal law is entitled to an Individualized Education Plan (IEP) which addresses specific educational problems in school. An IEP can minimize the effects of learning difficulties that are keeping the student from performing up to his/her potential.

Is TS inherited?Yes. We think that there are genes which are responsible for TS, but so far we have not found the gene or genes which cause TS. We also know that environmental and situation factors can have a big effect on how severe tics are. It is best to think about both genes and environmental factors as important to the cause of TS.

Can an infection trigger TS?It has been suggested that in very rare cases, tics may suddenly start after a certain kind of strep infection (a Group A, Beta-hemolytic streptococcal infection). But this has not been proven and so more studies are needed to determine if there is a connection.

Is there a cure?There is no cure for TS yet, but treatments to reduce tic severity and the symptoms of other related conditions can be very effective. A lot of progress has been made in understanding the treatments for TS.

Does TS ever go away?Most people with TS show noticeable improvement in their late teens or early twenties, and some even become tic-free. Only a small percentage of people with TS continue to have very severe and persistent tics into adulthood.

How many people in the U.S. have TS?Untilthe1970s,TSwasthoughttobeveryrare.Asawarenessof TS has grown, more people with milder symptoms are being diagnosed. Tics are more common in children than in adults, and mild cases of TS are more common than severe cases. Thecurrentestimateisbetween3-6childrenoutof1000arelikely to be affected.

What is the current focus of research?Since1984,theTouretteSyndromeAssociation,Inc.(TSA)hasfunded research that specifically affects the health of people with TS.

The TSA supports individual researchers and also several international groups of scientists who work together and share new information about specific aspects of TS. TSA is determined to find better treatments for children with TS.

What is the Tourette Syndrome Association (TSA)?TheTSAwasfoundedin1972,andistheonlynationalvoluntary non-profit membership organization dedicated to identifying the cause, finding the cure and controlling the symptoms of Tourette Syndrome through education, research and service.

Members include individuals with TS, and their family and friends. We are able to help with research, education and support because of the money we raise from very generous people and organizations.

What does TSA do? Wehaveawebsite(http://tsa-usa.org)thatprovides

information and answers your questions WehelpfamiliesincrisisthroughourInformationand

Referral Service Wepromotepublicandprofessionalawarenessand

understanding of TS Wekeepastate-by-statelistofdoctorsandother

professionals (e.g. psychologists, social workers, counselors) so we can help you find a doctor

Wehaveateachereducationprogramandprovideguidance to parents on how to get an IEP for your child

Weorganizeworkshopsforscientists,cliniciansand others working in the field of TS. Our goal is to increase the knowledge and sensitivity of health care professionals about TS through exhibits at conferences and dissemination of literature at national meetings

Wehelpourfamiliesbyrelayingtheirissuestothegovernment with the goal of affecting critical policy issues including orphan drugs, health insurance and employment

Wepublishaquarterlynewsletterandproducebrochuresand DVDs that discuss in detail many of the topics addressed in this pamphlet. For a full list and description, please look in the publications section of our website at http://tsa-usa.org

What type of support is there for families?The TSA has regional chapters and support groups in most areas of the USA. These local groups provide help and support that allow families to exchange ideas and feelings about their common problems. Please contact us to obtain information about the chapter in your area.

2010

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