Pediatric Tourette Syndrome

Tourette syndrome is a neurological disorder. It is also called Tourette disorder. The disorder causes repeated tics. Tics are sudden, uncontrolled vocal sounds or muscle jerks. Symptoms of Tourette syndrome 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 be more disruptive to daily life.

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 Tourette syndrome or the gene for Tourette syndrome has a one in two chance to pass the gene on to each child.

In up to one in 20 children with Tourette syndrome, the disorder 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).

Tourette syndrome affects more boys than girls.

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

Tourette syndrome 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.

Tourette syndrome 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 Tourette syndrome. If a son inherits the gene, there is an almost sure chance (99%) that he will have at least one sign of Tourette syndrome.

The symptoms of Tourette syndrome can seem like other health conditions. Have your child see their healthcare provider for a diagnosis.

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

• Your child’s symptoms and health history
• Your family’s health history
• Developmental problems

The healthcare 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

Treatment will depend on your child’s symptoms, age and general health. It will also depend on how severe the condition is. Some children may not need treatment. A child with Tourette syndrome 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 daily function or school
• Your child has a 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 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 healthcare providers about the risks, benefits and possible side effects of all medicines.

Many children who have Tourette syndrome 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 Tourette syndrome include behavior problems, mood changes, social challenges and trouble sleeping.

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

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 educational team. Depending on how severe the disorder 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 healthcare provider 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.

Call the healthcare provider if your child has:

• Symptoms that don’t get better, or get worse
• New symptoms