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Tourette Syndrome in Children

WHAT YOU NEED TO KNOW:

What is Tourette syndrome (TS)?

TS is a disorder that causes your child to have tics. A tic is when your child makes sudden, fast movements or sounds that he or she cannot control. TS begins before 18 years of age. Tics are usually most severe between ages 10 and 12 years and often improve during adolescence.

What increases my child's risk for TS?

The exact cause is not known, but it may be linked to genetic changes that cause problems with chemicals in the brain. These chemicals affect the nerves that help control your child's movements, behavior, emotions, and thoughts. Your child is more likely to have TS if a close family member has TS. It is more common in boys. Ask your child's healthcare provider for more information about family history and other risk factors for TS.

What kinds of tics may my child have?

Your child will have at least 2 kinds of motor tics and at least 1 kind of vocal tic. The motor and vocal tics might happen at the same time, but they might happen separately. Your child will need to have the tics for at least 1 year before his or her healthcare provider will diagnose TS. Your child may have any of the following several times every day:

  • Motor tics can be simple or complex. Simple motor tics are short, quick, uncontrolled movements of one body area. Complex motor tics occur when your child has many simple motor tics at one time. Common examples include eye blinking, teeth grinding, or foot tapping. He or she may also bite or punch himself or herself, shrug his or her shoulders, or twitch his or her nose.
  • Vocal tics can be simple or complex. Simple vocal tics are when your child makes uncontrolled noises and sounds. Complex vocal tics are when your child speaks words or phrases without having control over what he or she is saying. Common examples include barking, throat clearing, or shouting. He or she may also make a sucking noise, curse, or say inappropriate things.

What should I know about tics?

  • Your child's tics may be worse when he or she is alone, stressed, tired, excited, or worried.
  • Your child may have warning signs before tics begin, such as feeling cold, warm, itchy, tingly, or heavy. When the tic occurs, these feelings go away.
  • Your child may have fewer tics when he or she is concentrating, doing activities, or sleeping.
  • At times, your child may be able to stop a tic from occurring. This may cause discomfort or a feeling of pressure in his or her body, causing many tics afterwards.
  • As your child grows older, tics may go away on their own.

What other problems might my child have?

Children with TS are more likely to also have attention deficit hyperactivity disorder (ADHD), obsessive compulsive disorder (OCD), or bipolar disorder. Ask your child's healthcare provider for more information on these disorders. Your child may also experience the following:

  • Being teased or bullied by other children
  • Embarrassment about the tics, or low self-esteem
  • Pain with certain motor tics
  • Temper tantrums, bullying other children or animals, or harming himself or herself
  • Trouble sleeping, bad dreams, or sleepwalking
  • Trouble learning in school

How is TS diagnosed?

Your child's healthcare provider will ask questions about your child's tics and health history. Tell the provider when the tics started, how often they occur, how bad they are, and if they interfere with daily activities. Tell him or her if a family member has TS or another tic disorder. Your child's healthcare provider may do testing to check your child's brain function. He or she may check your child's eyes, strength, memory, and problem solving ability. He or she will also check for other conditions, such as ADHD, OCD, anxiety, and mood disorders. These often occur with TS. Treatment for some of the other disorders may also improve tics.

How is TS treated?

Treatment for TS may not be needed, or may be started later. Your child's provider may recommend watching and waiting to see if the tics get worse. Your child's tics may become milder or go away during the teen years. Treatment may help make tics less severe but usually does not get rid of them completely.

  • Medicines may be given if your child's tics are painful, harmful, or make it hard for him or her to do daily activities. The medicines used to treat your child will depend on what other conditions he or she has. Medicines may be given to help decrease your child's tics. Some of the medicines may also help control anxiety, mood swings, or aggressive behavior. Some medicines may also help your child sleep. The provider will talk to you about common or severe side effects that each medicine can cause. He or she will also check over time to see if each medicine is still needed or can be stopped.
  • Biofeedback training helps your child to control how his or her body reacts to stress or pain. This training can help reduce tics by helping your child manage triggers that can lead to a tic.
  • Cognitive behavioral therapy (CBT) helps your child learn to control his or her behavior, thoughts, and emotions. CBT may help your child understand the tic disorder and help him or her cope with the symptoms.
  • Habit reversal therapy helps your child learn new behaviors to take the place of his or her tics. Your child learns to recognize when the urge to have a tic is building. Your child learns to choose an action that will interrupt the tic. He or she may need to do the action for up to 3 minutes before the tic urge stops.
  • Relaxation therapy helps decrease your child's physical and emotional stress. Stress may make your child's TS worse. Relaxation therapy may help your child learn to control the tics. Deep breathing, muscle relaxation, meditation, and listening to music can help your child cope with stressful events.

What can I do to help support my child?

  • Be patient. Remember that your child is not choosing to have tics. He or she is not acting out or trying to cause behavior problems. Punishment will not stop him or her from having tics. A calm and patient approach may help make the tics less severe or happen less often.
  • Help your child manage stress. Your child may have fewer tics when he or she is concentrating, doing activities, or sleeping. His or her tics may be worse when he or she is alone, stressed, tired, excited, or worried. It may help to create a regular schedule. For example, set up time during the day for your child to do his or her homework. This can help prevent him or her from trying to finish at the last minute.
  • Do not focus on the tic. The tic may get worse the more your child thinks about it. Help him or her focus on his or her strengths and interests. Do not let a tic disorder define your child.
  • Create a regular sleep schedule. Have your child go to bed at the same time every night. Make sure he or she will be able to get at least 8 hours of sleep. Lack of sleep can make a tic worse.
  • Encourage your child to let the tic out as soon as possible. The longer he or she tries to hold back the tic, the worse it may be when it happens. Your child may have warning signs before his or her tics begin, such as feeling cold, warm, itchy, tingly, or heavy. When the tic occurs, these feelings go away. At times, your child may be able to stop a tic from occurring. This may cause discomfort or a feeling of pressure in his or her body, causing him or her to have many tics afterwards.

Where can I find more information?

  • Tourette Syndrome Association
    42-40 Bell Boulevard
    Bayside , NY 11361-2820
    Phone: 1- 718 - 224-2999
    Web Address: http://www.tsa-usa.org

Call your local emergency number (911 in the US) for any of the following:

  • Your child tells you he or she feels like hurting himself or herself, or others.
  • Your child has hurt himself or herself, or someone else.

When should I seek immediate care?

  • Your child gets very upset, threatens someone, or is violent. This may include talking loudly, shouting, or becoming very demanding.
  • Your child has a high fever, muscle stiffness, and problems thinking.
  • Your child has new vision changes.

When should I call my child's doctor?

  • Your child is not sleeping well or sleeps more than usual.
  • Your child has trouble in school or becomes depressed or anxious.
  • Your child is having muscle spasms (twitching) or trouble walking.
  • Your child has new tics, or the tics are getting worse or preventing him or her from doing daily activities.
  • You have questions or concerns about your child's condition or care.

Care Agreement

You have the right to help plan your child's care. Learn about your child's health condition and how it may be treated. Discuss treatment options with your child's healthcare providers to decide what care you want for your child. The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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