Tourette's Disorder

Topic Overview

What is Tourette's disorder?

Tourette's disorder is a neurological (brain) condition that usually begins in childhood. It causes a child to make sounds or words (vocal tics) and body movements (motor tics) that are beyond his or her control. Tourette's disorder (TD) is also known as Tourette's syndrome and Gilles de la Tourette syndrome. Not all tics are from TD. Your child may have tics and not develop TD.

Motor tics usually begin between ages 2 and 8. Vocal tics can begin as early as age 2, but they usually start a few years after motor tics. Tics generally are at their worst about age 12. In most children, tics go away or decrease quite a bit in the teen years. But tics can continue into adulthood.

The effect tics have on children varies. Some children have mild tics that have a small impact on their lives. But even mild or infrequent tics may affect your child's self-esteem and relationships with friends and family. Severe and frequent tics may require treatment, including medicine and counseling. Although a child's tics may seem minor, they may interfere with the child's ability to learn and can cause embarrassment.

It is important to remember that:

• Tics are not a sign of low intelligence and do not affect intelligence.
• The severity of your child's tics is not a good indicator of how well he or she will perform in school or in social situations.
• How well your child can cope with tics can be helped by a supportive home, school, and community environment.

What causes Tourette's disorder?

TD is thought to have a genetic component. This means that having a certain gene or mix of genes makes a person likely to develop the condition. The exact gene or genes have not been identified. After answering a doctor's detailed questions about the family's medical history, many parents of a child with TD are surprised to learn that other family members may have also had symptoms of the condition.

Other things that may increase a person's risk for developing tics or TD include having:

• A mother who suffered from severe nausea and vomiting during the first trimester of pregnancy, was under severe stress during her pregnancy, or drank a lot of coffee, smoked cigarettes, or drank alcohol during her pregnancy.
• Insufficient oxygen or blood supply during birth.
• A low birth weight and signs of brain injury or an enlarged section of the brain.
• A lower birth weight than an identical twin.
• Abnormal evaluation results right after birth (low Apgar scores).
• PANDAS. Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) can affect tic development. It may make tics worse in children with tics, and it may also cause children who have not had tics to suddenly develop them. More research is needed to study this process.

What are the symptoms?

Most children with TD have unique types and patterns of vocal and motor tics. These tics may:

• Be a slight twitching of the eyes, jerking of the neck, coughing or throat-clearing, or a series of movements and sounds.
• Occur in bursts of movement (motor) or sounds (vocal). The burst may last from several seconds to several minutes. Tics may also occur more slowly.
• Come and go (wax and wane) over a period of weeks and months and may also change from one type to another. Your child's tics may get more severe and occur more often, and then gradually get better. Weeks or months later, your child may develop a new tic, or an old tic may come back for a while. If your child's symptoms seem to get worse at times, do not assume that you (or your child's school) are doing something wrong. Although things that happen at home and school can have an effect, sometimes tics get worse even when all is going well.

A common stereotype of people with TD is that they all have uncontrollable outbursts of cursing or obscene or sexual behavior. These types of complex tics are not required for a diagnosis of TD. Even though these types of tics may seem routine for TD from what you see on TV and in movies, most children and teens with TD do not have these symptoms.

How is Tourette's disorder diagnosed?

A doctor can diagnose Tourette's disorder based on your child's medical history and the kinds of symptoms you and other caregivers have noticed. Children may suppress, or hold back, their tics while they're in the doctor's office, so it may help to bring a videotape that shows your child's tics. But a doctor may diagnose TD even though he or she has not seen a video or personally observed any tics.

Your doctor will want to know whether tics are causing school or social problems for your child. Your child may also need psychological testing and testing for learning problems.

As with many other conditions, there are no brain tests or blood tests that can prove a person has TD. But in some cases an electroencephalogram (EEG), a CT scan, or blood tests are done to check for other conditions.

Your child may also be evaluated for ADHD and OCD. These conditions may occur along with Tourette's disorder. Also, your doctor may ask whether you have noticed signs of other problems for which your child is at increased risk, such as depression or anxiety disorders.

How is it treated?

Treatment for Tourette's disorder focuses on managing tics-helping your child and others cope with the tics. Most cases of TD are mild and will not require medical treatment. Educating yourself, your child, and those around your child (such as teachers) about TD will help your child thrive, as will creating a supportive home and school environment where tics are accepted and accommodated.

In some cases, such as when other conditions are present, counseling may be helpful. If your child's tics affect his or her life significantly, medicines or habit reversal may be considered. The tics can be decreased, but there is no cure for TD at this time.

Frequently asked questions

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Symptoms

Symptoms of Tourette's disorder (TD) include motor tics (sudden body movements) and vocal tics (sounds and words) that are not under your child's control. Motor and vocal tics can occur many times throughout the day. They can be simple or complex.

• Simple motor tics involve only one muscle group, while complex motor tics can be a combination of many simple motor tics or a series of movements that involve more than one muscle group.
• Simple vocal tics involve simple sounds made by moving air through the nose or mouth. Complex vocal tics involve words, phrases, and sentences.

Many children and adults with TD report feeling some urge or sensation in some part of the body that builds and builds until it is irresistible. This uncomfortable sensation can only be relieved by performing (releasing) the tic. This is known as "premonitory urge." Not everyone with TD is aware of such urges, though. In fact, many children may not even realize that they are having tics. They can be quite surprised when questioned about a tic they are having, such as when someone asks, "Why are you blinking so much?"

The tics are not always obvious. They may come and go over a period of months, change from one type to another, or disappear for no apparent reason. Tics tend to decrease or go away completely during sleep. Your child may suppress tics (much like suppressing a sneeze) or not have any for short periods, such as during a doctor visit, while absorbed in physical activity, or when concentrating on another activity. Sometimes tics last longer and are more severe than usual, such as after your child has tried to resist (suppress) them. They may also get worse when your child is ill, under stress, or excited.

Be aware that not all tics are related to TD; your child may have tics and not develop TD.

A common stereotype of people with TD is that they all have uncontrollable outbursts of cursing or obscene or sexual behavior. These types of complex tics are not required for a diagnosis of TD. Even though these types of tics may seem routine for TD from what you see on TV and in movies, most children and teens with TD do not have these symptoms.

Other myths about Tourette's disorder include a belief that the child can control tics if he or she wants to or that people with TD are trying to get attention.

Children with TD often have other disorders and problems, such as depression, attention deficit hyperactivity disorder (ADHD), or obsessive-compulsive disorder (OCD). For more information, see the following topics:

Depression in Children and Teens

Attention Deficit Hyperactivity Disorder (ADHD)

Obsessive-Compulsive Disorder (OCD)

Common patterns of Tourette's disorder

The tics of TD vary in type, severity, and how often they occur. A child may develop a new tic that seems to increase in frequency and severity over a period of weeks, and then it gradually tapers off or disappears. Weeks or months later, a new tic may start, or an old tic may come back and then occur more and more often and get more severe. This pattern of an increase in tics followed by a period of fewer symptoms and some periods when tics rarely occur is known as "waxing and waning" cycles and is typical of TD.

If your child's symptoms get worse, don't assume that you (or teachers) are doing something wrong. Although certain triggers at home or school can make tics worse, sometimes tics increase and become more severe for no apparent reason.

Although specific tics can come and go unpredictably, Tourette's disorder often follows a general pattern.

• Uncontrolled movements (motor tics) usually begin between ages 2 and 8. Uncontrolled sounds and words (vocal tics) can begin as early as age 2 but usually develop a few years after motor tics. The first tics are usually simple motor tics affecting the head and neck. But sometimes vocal tics appear before motor tics. Your child may or may not be aware of the tics, and you might ignore them because tics are easy to confuse with symptoms of a cold or allergies. At first, many parents mistake tics such as frequent blinking or winking with vision difficulties or playful behavior.
• Over the next few years the tics may change in location and become more severe and/or frequent at times. Your child probably will become aware of them and may explain them in different ways. Some ways may be comforting: "I have a silly little cough." Other ways can be upsetting: "I am going crazy," or "Something inside me is making me act goofy." Your child may try to cover up the tics by making other sounds or movements. The tics may appear to be normal activity (such as brushing hair away from the face) except that the activity is done repeatedly.
• Tics usually are most severe about age 12. Your child may be able to tell when a tic is starting (premonitory urge). He or she may feel muscle tightness, a skin irritation (such as a tickle), or a skin temperature change. But your child may not "feel" a tic coming on or only feel it sometimes.
• In adolescence, tics happen much less often or disappear for no reason for up to two-thirds of all children with TD.¹ By adulthood, many people with TD still have tics, but they occur less often and are less severe than in childhood. Adults may continue to have other disorders and problems such as ADHD or OCD.

Although the majority of children and teens with TD will have fewer tics after age 12, some will see an increase during the teen years, and the symptoms of other conditions (such as ADHD and OCD) may not decrease. For many youths, the tics of TD are not as much of a problem as interference from ADHD, OCD, mood disorders, or other conditions.

Tics that begin after age 18 are not considered TD but another tic disorder.

Exams and Tests

A doctor can diagnose Tourette's disorder (TD) based on your child's medical history and the kinds of tics and other symptoms you and other caregivers have noticed. As with many other conditions, testing to look at brain function or substances in blood may be done but can't be used to confirm a diagnosis of TD.

Children may suppress their tics while they are in the doctor's office, so it may help to bring a videotape that shows your child's tics. But doctors may diagnose TD even though they have not seen a video or observed any tics during the child's office visit.

Your doctor will ask you and sometimes other people who have regular contact with your child questions about school and other areas of your child's life. You, your child, or the doctor can also use assessment tools, such as the Yale Global Tic Severity Scale or the Tourette's Disorder Scale, to help the doctor get a better sense of how your child is doing. Your child may need psychological testing and testing for learning problems.

Tourette's disorder may be diagnosed using the following criteria:²

• Tics begin before the age of 18 years. Tics that begin after age 18 are not considered to be caused by Tourette's disorder.
• Both body movements (motor tics) and sounds or words (vocal tics) are present (although not always at the same time) and have lasted for at least 1 year.
• Tics occur many times a day (usually in bursts) and nearly every day. Tics never disappear for longer than 3 months.
• Tics are not caused by another condition, such as seizures, or by medicines.

Tourette's disorder can be difficult to diagnose, because other tic disorders can cause motor movements and/or vocal sounds. Tests that may be done to check for other conditions include:

• An EEG or a CT scan of the head to see whether your child has seizures or other brain problems.
• Blood tests to check for other conditions, including overuse of certain medicines (such as amphetamines); pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS), which can affect tic development; or rare medical conditions, such as not being able to break down copper in the body (Wilson's disease).

Because attention deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), and other conditions such as depression are often associated with Tourette's disorder, your child's doctor may also look for signs of these problems. For more information, see the following topics:

Attention Deficit Hyperactivity Disorder (ADHD)

Obsessive-Compulsive Disorder (OCD)

Depression in Children and Teens

Treatment Overview

Treatment for Tourette's disorder (TD) focuses on managing tics-helping your child and others cope with the tics. Most cases of Tourette's disorder are mild and will not need medical treatment. Educating yourself, your child, and people who have regular contact with your child (such as teachers) about Tourette's disorder will help your child thrive. Creating a supportive home and school environment where tics are accepted and accommodated is also important.

Growth and development: Helping your child build self-esteem

In some cases, such as when other conditions are present, counseling may be helpful. If your child's tics affect his or her life significantly, medicines or behavior therapies such as habit reversal may be considered. The tics can be decreased, but there is no cure for Tourette's disorder at this time.

Finding the right treatment for Tourette's disorder can be time-consuming, especially if other disorders and problems such as attention deficit hyperactivity disorder (ADHD) are present. The Tourette's disorder organizations listed in the Other Places to Get Help section of this topic often can refer you to health professionals who understand Tourette's disorder and the treatment available.

If Tourette's disorder occurs along with other disorders or problems, work with your child and doctor to find out which symptoms are causing the most difficulties. Get input from teachers to give you a sense of what is happening in your child's school environment. (Your child's symptoms may be quite different in school than at home.)

Targeting specific problems is important so you know which to treat first. Some medicines that are used to treat tics may not help with any other condition.

Sometimes tics can be reduced by first treating conditions that can occur along with TD. This is because some conditions, such as behavioral problems, can make tics worse. Conditions such as depression or anxiety usually need to be treated before TD.

For more information on conditions that often occur with Tourette's disorder, see the following topics:

Attention Deficit Hyperactivity Disorder (ADHD)

Obsessive-Compulsive Disorder (OCD)

Depression in Children and Teens

Because everyone who has Tourette's disorder has unique tics and considerations, treatment must be tailored to fit the child.

• Children with mild tics may only need extra support and changes made to their environment to avoid triggering tics. Often tics will improve from making a few changes at school, such as allowing your child to take tests untimed and in a private room. It may also help to take steps to reduce problems that your child has as a result of the tics, such as being embarrassed about having tics when around other kids. For example, you may be able to talk with teachers about showing a video to your child's classmates about Tourette's disorder.
• Children whose tics seriously affect their quality of life or ability to function in school, at home, and in the community may benefit from medicine or therapy to control their tics.

Both you and your child should work with your child's doctor to manage Tourette's disorder. It is important that decision making is shared as much as possible. Talk to a doctor about finding help for you and your child together and individually.

As your child grows and goes through different developmental stages, you will likely need to provide more information about TD to encourage his or her understanding and good management of the condition. Over time, you will also need to see whether adjustments are needed in your child's school environment. Counseling may also be more important for your child in some stages of development than others.

Initial treatment

Initial treatment for children with Tourette's disorder may include:

• Educating yourself and others. Understanding Tourette's disorder makes it possible to recognize what your child is going through and to help others understand as well. Your doctor will often start the educational process by talking with you and your family about Tourette's disorder. The family can then keep learning about the disorder through the resources that Tourette's disorder organizations provide. Your doctor, local hospitals, and community outreach programs can help you. For organizations that can help, see the Other Places to Get Help section of this topic.
• Understanding how tics affect your child. Try to identify what triggers tics. It may help you to find patterns by writing down when tics occur and what is going on in your child's life during these times.
• Making changes. Your child may have fewer tics if you and your child's other caregivers make changes at home or school, such as alternating house chores with free time or allowing for rest periods in school.
• Habit reversal. Your child may be able to control problematic or embarrassing tics through habit reversal. Habit reversal focuses on creating an awareness of tic behavior and a response to replace the tic.³ This technique should be taught by a qualified professional. Ask your doctor for recommendations.
• Counseling. During counseling sessions, a qualified therapist helps your child cope with thoughts, feelings, or behaviors relating to Tourette's disorder. Counseling cannot stop tics, but it may decrease anxiety and help your child feel better about himself or herself. Family members may be asked to participate in the counseling sessions.

Ongoing treatment

The symptoms of Tourette's disorder change as your child gets older. Tics come and go and seem worse at times. School performance and social situations that involve talking with or in front of others can be especially hard for your child. Ongoing treatment consists of matching your management of the disorder to how the tics are currently affecting your child.

• Understand Tourette's disorder and continue to educate yourself and others about the disorder.
• Be aware of how tics change as your child grows. Continue to record the kinds of tics your child develops and what seems to trigger them.
• Make changes at home or school when needed. A solid support system is important for helping your child to successfully manage tics.
• Continue counseling, if necessary. If appropriate, continue to use habit reversal, which focuses on creating an awareness of tic behavior and creating a response to replace the tic.

Treatment if the condition gets worse

If Tourette's disorder is disrupting your child's life, such as affecting his or her school work or ability to function at home or in the community, consider:

• Making additional changes at home or school to accommodate any changes in how tics occur.
• More extensive counseling for everyone who is affected by the disorder.
• Using habit reversal if taught by a well-trained professional. Habit reversal focuses on creating an awareness of tic behavior and creating a response to replace the tic.
• Using medicine. Medicine can help make tics less severe or occur less often. But some medicines have severe side effects. Always talk with your child's doctor about the benefits and risks of using medicine.

Adult treatment

Because an adult with Tourette's disorder has had the disease since childhood, treatment generally is well established and depends on each adult's situation. It is important that those who interact with the adult who has Tourette's disorder understand the disease and that tics are not willful. Medicines may be necessary, as is counseling if Tourette's disorder is severely affecting the adult's life.

Other treatment

Deep brain stimulation (DBS), in limited studies, has shown promise as treatment for reducing tics in adults. In this procedure, electrodes are surgically placed in certain areas of the brain, such as the basal ganglia. These electrodes are connected to another device that is surgically placed in the chest. The device in the chest sends signals to the electrodes in the brain. This process can help prevent or limit tics. Researchers continue to investigate this treatment and the risks of side effects, such as bleeding in the brain or unwanted changes in motor function. At this time, DBS is an experimental treatment and is not considered for use in children.⁴

Home Treatment

Home treatment for Tourette's disorder focuses on educating yourself and others about the condition, understanding how the tics affect your child, and making changes at home and school to best accommodate your child.

Write down what kinds of tics your child has, when they get worse, and the events that happen around when the tics occur. Keeping such a record can show patterns that may help identify triggers, which can help you better manage your child's symptoms. It may also be useful if your child is starting new medicines. Be careful not to cause your child more stress by doing this. Don't approach this in a way that makes your child uncomfortable or more self-conscious than normal.

Understanding Tourette's disorder makes it possible to recognize and share with others what your child is going through. Learn as much as you can about the disorder. Your doctor, local hospitals, and community outreach programs can help you.

Changes at home and at school

There are many ways you can help your child with Tourette's disorder at home:

• Don't treat tics as willful behavior. Although tics can appear to be "on purpose" and may frustrate you, do not punish your child for having tics, and try not to show any frustration you may feel. Doing so may increase your child's anxiety and cause more tics. Remember that your child cannot control his or her tics.
• Alternate household tasks with free time.
• Notice when your child's tics get worse. Sometimes you may be able to find triggers and can help your child work through them or avoid them. But because tics that are associated with Tourette's disorder come and go, it may be difficult to know exactly why they sometimes get worse. You can help reassure your child during these times by staying calm and helping him or her to relax.
• Encourage your child to increase responsibilities at his or her own pace.

Teachers can help your child with Tourette's disorder at school if they:

• Provide more time for your child to take written tests.
• Allow your child to use a computer, word processor, or typewriter or to recite assignments rather than handwriting them if tics affect writing.
• Provide a seat where there is little distraction and some privacy.
• Allow for frequent rest periods when needed.
• Allow your child to leave the room if he or she needs to move around or let the tics occur in private.
• Set a good example for accepting your child. It is important for your child to have teachers who discourage teasing by responding quickly and firmly whenever it occurs.
• Provide tutoring, learning laboratories, or special classes if needed.

Habit reversal

If a well-trained health professional has worked with you and your child on habit reversal, continue to practice this with your child. Habit reversal focuses on creating an awareness of tic behavior and developing a response to replace the tic.

Other Places To Get Help

Online Resource

Organizations

Related Information

• Attention Deficit Hyperactivity Disorder (ADHD)
• Bipolar Disorder in Children and Teens
• Depression in Children and Teens
• Growth and Development, Ages 11 to 14 Years
• Growth and Development, Ages 2 to 5 Years
• Growth and Development, Ages 6 to 10 Years
• Obsessive-Compulsive Disorder (OCD)
• Phobias

References

Citations

1. Sadock BJ, Sadock VA, eds. (2007). Tic disorders. In Kaplan and Sadock's Synopsis of Psychiatry: Behavioral Sciences/Clinical Psychiatry, 10th ed., pp. 1235-1243. Philadelphia: Lippincott Williams and Wilkins.

2. American Psychiatric Association (2000). Tourette's disorder. In Diagnostic and Statistical Manual of Mental Disorders, 4th ed., text rev., pp. 111-114. Washington, DC: American Psychiatric Association.

3. Leckman JF (2002). Tourette's syndrome. Lancet, 360(9345): 1577-1586.

4. Zinner SH (2004). Tourette syndrome-much more than tics: Management tailored to the entire patient. Contemporary Pediatrics, 21(8): 38-49.

Other Works Consulted

• Fahn S (2005). Gilles de la Tourette syndrome. In LP Rowland, ed., Merritt's Neurology, 11th ed., chap. 112, p. 815. Philadelphia: Lippincott Williams and Wilkins.

• Mell LK, et al. (2005). Association between streptococcal infection and obsessive-compulsive disorder, Tourette's syndrome, and tic disorder. Pediatrics, 116(1): 56-60.

• Minagar A, et al. (2003). Tourette's syndrome. In RW Evans, ed., Saunders Manual of Neurologic Practice, chap. 5, pp. 218-221. Philadelphia: Saunders.

• Murray BJ (2006). Tourette syndrome. In MR Dambro, ed., Griffith's 5-Minute Clinical Consult, pp. 1132-1133. Philadelphia: Lippincott Williams and Wilkins.

• Pappert EJ, et al. (2003). Objective assessments of longitudinal outcome in Gilles de la Tourette's syndrome. Neurology, 61(7): 936-940.

• Popper CW, et al. (2003). Tourette's disorder section of Disorders usually first diagnosed in infancy, childhood, or adolescence. In RE Hales, SC Yudofsky, eds., Textbook of Clinical Psychiatry, 4th ed., chap. 20, pp. 904-911. Washington, DC: American Psychiatric Publishing.

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