Tourette Syndrome (TS)

Description

Tourette Syndrome (TS) is a neurological problem. It is also called Tourette disorder. The syndrome causes repeated tics. Tics are sudden, uncontrolled vocal sounds or muscle jerks. Symptoms of TS often start between ages 5 and 10. They usually start with mild, simple tics of the face, head, or arms. Over time, a child may have different kinds of tics that may happen more often. They may also involve more parts of the body, such as the trunk or legs. And they may disrupt the child's daily life more.

Causes

Most cases of Tourette syndrome are caused by genes. It is an autosomal dominant disorder. Autosomal means that the gene is not on a sex (X or Y) chromosome. Dominant means that only one copy of the gene is needed to have the condition. A parent with TS or the gene for TS has a 1 in 2 chance to pass the gene on to each child.

In up to 1 in 20 children with TS, the syndrome is not caused by genes. Possible causes in these cases may be problems during pregnancy, low birth weight, head injury, carbon monoxide poisoning, or inflammation of the brain (encephalitis).

Children Who Are at Risk

TS affects more boys than girls.

Symptoms

The most common symptoms are uncontrolled muscle movements. They may occur in the face, neck, shoulders, torso, or hands. Examples include:

• Head jerking.
• Squinting.
• Blinking.
• Shrugging.
• Grimacing.
• Nose-twitching.
• Repeated foot tapping, leg jerking, scratching, or other movements.

Complex tics include:

• Kissing.
• Pinching.
• Sticking out the tongue or lip-smacking.
• Touching behaviors.
• Making rude gestures.

TS also includes one or more vocal tics, such as:

• Grunting or moaning sounds.
• Barking.
• Tongue clicking.
• Sniffing.
• Hooting.
• Saying rude things.
• Throat clearing, snorting, or coughing.
• Squeaking noises.
• Hissing.
• Spitting.
• Whistling.
• Gurgling.
• Echoing sounds or phrases repeatedly.

Tic behaviors change over time. They also vary in how often they occur.

TS can occur differently in boys and girls. Boys are more likely to have long-term (chronic) tics. Girls are more likely to have obsessive-compulsive disorder (OCD). This is an anxiety disorder. With OCD, a child has a repeated thought, fear, or worry (obsession) that they try to manage through a certain behavior (compulsion) to reduce the anxiety.

Not everyone with the gene will have symptoms of Tourette syndrome. If a parent passes the gene to a child, the child may not have any symptoms. If a daughter inherits the gene, there is a 7 in 10 chance that she will have at least one sign of TS. If a son inherits the gene, there is an almost sure chance (99%) that they will have at least one sign of TS.

The symptoms of TS can seem like other health conditions. Have your child see their doctor for a diagnosis.

Diagnosis

A child with TS is usually diagnosed around the age of 7. A primary care provider, pediatrician, child psychiatrist, or a mental health provider may diagnose your child. The provider will ask about:

• Your child's symptoms and health history.
• Your family's health history.
• Developmental problems.

The provider will also:

• Watch your child's behavior.
• Ask for a history of your child's behavior from teachers.
• Assess your child's psychological, social, and educational status.

A diagnosis of Tourette syndrome needs the presence of different tics for at least one year.

Treatment

Treatment will depend on your child's symptoms, age, and general health. It will also depend on how bad the condition is. Some children may not need treatment. A child with TS can usually function well at home and in a regular classroom.

In some cases, a child may need special classes, psychotherapy, or medicine. These may be choices if:

• Tics cause problems with a child's daily functioning or school.
• Your child has another problem, such as OCD or attention deficit/hyperactivity disorder (ADHD).
• Your child has another emotional or learning problem.

A treatment called Comprehensive Behavioral Intervention for Tics (CBIT) can help children deal with tics and reduce tics.

Your child may need medicines if they have related conditions such as ADHD, OCD, or a mood disorder. Talk with your child's doctor about the risks, benefits, and possible side effects of all medicines.

Possible Problems from Tourette Syndrome

Many children who have TS also have attention problems. Some have trouble in school, but most have normal intelligence and don't have a learning disability.

Other conditions commonly seen in children with TS include behavior problems, mood changes, social challenges, and trouble sleeping.

Prevention

Your doctor may advise genetic counseling. You can discuss with a counselor the risk for Tourette syndrome in a future pregnancy.

Helping Your Child Live with Tourette Syndrome

Your child may need support and help with:

• Self-esteem.
• Relationships with family and friends.
• Classroom participation.

Develop a strong, positive relationship with your child's education team. Depending on how bad the syndrome is, they can both support your child in the classroom and also help with social situations. As your child gets older, pay attention to social media and possible issues with bullying. Seek professional counseling for your child and their siblings to help deal with the emotional impact of Tourette syndrome. Talk with your child's doctor and school staff about the best ways to support your child.

Tourette syndrome has no cure, and the condition is lifelong. It does not get worse over time. And some children see their tic symptoms decrease in their late teens and early 20s. People with Tourette syndrome also have a normal life expectancy. Tic symptoms tend to decrease with age, but ADHD, OCD, depression, generalized anxiety, panic attacks, and mood swings can continue and cause ongoing problems in adult life.