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Tourette Syndrome

What is Tourette Syndrome?

Tourette Syndrome is a neurological, genetic condition that begins in childhood. Tourette Syndrome is diagnosed in children who have a series of different repetitive, patterned movements called motor tics, and sounds called vocal tics, for more than a year.

Most cases of Tourette Syndrome involve tics that cause few problems. Most persons with this disorder never have swearing tics (called coprolalia). Tics often change where they are, how often they are, and how intense they are over time. Tics may decrease or stop in adulthood.

Provisional tic disorder is diagnosed when children have one or more tics for a short period of time. Some children will have symptoms continue, and will be diagnosed with Tourette Syndrome, Chronic Motor Tic Disorder, or Chronic Vocal Tic Disorder. At the child’s first clinic visit, the medical diagnosis may be Provisional Tic Disorder. But if the child is seen and the parent reports a history of tics in the past that have stopped, then the doctor may give a historical diagnosis of Transient Tic Disorder, which simply indicates that tics present earlier in childhood have stopped.

Brief periods of tics in childhood cannot be explained in most cases. They don’t need any diagnostic testing or treatment. Periods of tics in childhood have few or no social consequences and do not interfere with the child's quality of life.

Tics in young children are common. They should be ignored if there are no other medical, physical or emotional problems.

Tics are common in older children with anxiety or obsessive compulsive disorder (OCD) and in children with autism. Sometimes medications may contribute to tics.

Tourette Syndrome is believed to be a genetic condition because it runs in families. In approximately 90% of cases of a child with Tourette Syndrome, at least one relative has had symptoms of tics, usually in childhood.

Is Medical Testing Needed to Diagnose Tourette Syndrome?

There is no medical test available for Tourette Syndrome or tic disorders. If the neurological symptom is tics, and the neurological and medical examination is otherwise normal, it is not necessary to order any tests. When an experienced clinician evaluates your child in person, a careful history and physical examination is highly accurate.

When Should Tics Be Treated?

Tics should be treated if they are painful or disruptive to the child's life. The possible benefit of reducing the tics should be compared to the possible risk of a side effect from the medication.

Tics are rarely harmful. No treatment can get rid of tics, although they may eventually disappear on their own. Just because a person has tics doesn't mean medication is needed. Often in younger children, the parents are much more upset about the tics than the child is.

Can Tics Be Treated without Medication?

Tics can improve without medication. A supportive environment for the child or teen may make tics better. Allowing a child to relax and be themselves at home and not worry about the tics is often the best approach if tics are non-impairing and there are no co-occurring problems.

If attention deficit hyperactivity disorder (ADHD), OCD, anxiety or depression symptoms are present, sometimes treating these other problems can help to reduce tics. For example, sometimes tics fade when ADHD or anxiety is more effectively treated. There is a behavioral therapy that has been shown to reduce tics in many kids and adults. This is called Comprehensive Behavioral Intervention for Tics (CBIT). The neurologists in the Movement Disorders Clinic at Cincinnati Children’s work in partnership with psychologists who offer this treatment.

Here are some non-medical interventions that may help if tics are bothersome:

  • Help the child realize that they are loved and accepted despite the tics.
  • Help the child take ownership. By 4th grade, ideally a child should be comfortable telling adults (teachers, coaches, relatives) and other kids, “I have tics” or, if appropriate, “I have Tourettes.” Humor can help, like saying, “I'm having a bad tic day, which ticks me off,” for example. Children who pretend they don't have tics or who ignore questions about tics and walk away manage the social issues of Tourette Syndrome less effectively than children who are open about it.
  • Excellence helps prevent teasing. A child who is excellent at music, sports. or other activities can feel proud of himself and respected by others. This respect tends to enhance self-esteem and may reduce teasing by peers.
  • Explain to siblings, grandparents and all family members that tics are OK. Ignore the tics at home. Siblings should not tease about tics.
  • Suggest time outs from class, like extra bathroom passes or errands to the office, to allow time to let out tics outside the classroom.
  • Encourage stress reduction, physical activity, good sleep and a healthy diet.
  • Video games are not prohibited. However, excessive use should be discouraged.

Key points about medications to suppress tics:

Tics should not be treated just because they are noticed. Tics are not harmful, and for many children, no medication treatment is needed. The decision to treat tics is based on the impact of the tics on the quality of life of the child with the tics. Some children function fine at home, socially and at school despite very frequent tics. It is usually not necessary to treat tics in these cases. Treatment will not eliminate tics in most cases.

Treatment with medication may be helpful when tics are associated with:

  • Pain: Sometimes frequent tics cause muscle pains or headaches. The sensory feeling that accompanies some tics may be painful or consistently annoying. Some children have self-injuring tics like pinching or smacking.
  • Social/psychological problems: When tics are frequent in children in mid- to upper-elementary grades, stigmatization, teasing, and even bullying may be problems. Parents of school-aged children should discuss with the child what to say when someone asks about tics or teases them. Children may say, “It's just a habit,” “It's just something I do,” “It's a tic,” or, “I have Tourettes.” Sometimes, a presentation to the class to educate other students may help.
  • For teens, tics may cause or increase moodiness, anxiety, sadness or depression. Membership in the Tourette Association of America may be helpful for meeting other kids with these symptoms and learning about successful or famous adults with Tourettes.

    Research shows that parents are often more concerned about the social consequences of tics than kids are.

  • Functional interference: When tics are very frequent, they may interfere with reading, writing, speaking, playing musical instruments or sports. Fortunately, this is uncommon. A child may tic while waiting for a pitch. But, once the baseball is thrown, the tics disappear while the child focuses on hitting the ball.
  • Classroom disruption: Occasionally, a child may develop a very loud vocal tic. Frequent sniffing or throat clearing tics can also be misinterpreted as signs of illness and can be disruptive in class. If frequent, vocal tics can be disruptive to the family and classroom.

Things to know about medications for tics:

  • Medications do not cure the tics. Medicines mainly improve symptoms.
  • Medicines rarely reduce tics more than 50%. Even with medication, tics will likely be noticed by others.
  • Adults usually tic less, whether they were treated as children or not. For most people with tics, symptoms are more severe in childhood than in adulthood. There is no evidence that using medications for tics in childhood increases or decreases the chance of tics in adulthood.
  • Choosing the right medicine is a trial and error process. No single medicine works for everyone. All medicines have possible side effects.
  • Medications must be taken daily to work. There are no proven treatments that can be used as needed on a bad day for tics in kids. Benefits may occur over days to weeks.
  • Start low, go slow and taper off slowly. Side effects are less common when we start with a low dose and increase gradually. Once we decide to stop a medication, we taper off slowly, not all at once.

Approach to Treatment of Tics and Tourette Syndrome

Children who have long-term tics or have Tourette Syndrome commonly have other problems such as ADHD, anxiety, obsessive compulsive disorder or learning problems. These should all be considered when deciding on treatment(s). Here is our approach with children and families.

  • Rank your child’s symptoms. For many, the ADHD or OCD symptoms are more disruptive than the tics.
  • Consider non-medical and medical treatments, starting with the most concerning symptom.
  • If ADHD is the most concerning problem, it may still be OK to use stimulants. Talk about the pros and cons with your doctor.
  • Do not begin treatment with two drugs at the same time, even if there are two treatable problems. If a side effect happens, it will not be clear which drug is responsible. Sometimes one medication can help two different symptoms.
  • If learning problems are significant, consider formal psycho-educational testing through the school system or a psychologist. Although most children with tics have normal-range learning, learning disabilities and behavioral problems are still more common. Psychological or educational testing can help identify whether certain other diagnoses are present. For example, some children who appear to have ADHD may have other psychiatric diagnoses such as anxiety or depression.
  • If a parent has ongoing problems with anxiety, anger, depression, or substance abuse, it is unrealistic to expect the child's behavior to improve with just medications for tics.
  • If behavior issues, impulse control and/or rages are a bad problem, medicines alone probably will not be enough. Find a knowledgeable psychologist to help. This may be more important than medications for some kids, and may be needed several different times during the childhood and teenage years. Family therapy or parent training may be needed to help manage behaviors in younger kids. In many situations, the preferred type of psychological therapy is cognitive behavior therapy. Research shows that combining medication and behavioral therapy is often the best strategy.

Behavioral Treatment (CBIT)

A behavioral treatment called Comprehensive Behavioral Intervention for Tics has been shown in carefully conducted research to be helpful for managing symptoms of Tourette Syndrome. Neurologists in the Movement Disorders Clinic at Cincinnati Children’s often refer children and adolescents to psychologists for this treatment.

Although there is no specific treatment to eliminate Tourette Syndrome or tics, there are ways to manage them. If you have questions or concerns, contact your child’s doctor or the Cincinnati Children’s Movement Disorder Clinic.

Last Updated 10/2023

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