Tourette Syndrome

What is Tourette disorder in children?

Tourette disorder (TD) is a neurological disorder. It is also called Tourette syndrome. The disorder causes repeated tics. Tics are sudden, uncontrolled vocal sounds or muscle jerks. Symptoms of TD 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.

What causes Tourette disorder in a child?

Most cases of Tourette disorder 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 TD or the gene for TD has a 1 in 2 chance to pass the gene on to each child.

In up to 1 in 20 children with TD, 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).

Which children are at risk for Tourette disorder?

TD affects more boys than girls.

What are the symptoms of Tourette disorder in a child?

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

TD 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.

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

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

How is Tourette disorder diagnosed in a child?

A child with TD 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

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

How is Tourette disorder treated in a child?

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 TD 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.

What are possible complications of Tourette disorder in a child?

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

How can I help prevent Tourette disorder in my child?

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

How can I help my child live with Tourette disorder?

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 bad 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 disorder. Talk with your child’s healthcare provider and school staff about the best ways to support your child.

Tourette disorder 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 disorder 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.

When should I call my child’s healthcare provider?

Call the healthcare provider if your child has:

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

• New symptoms

Key points about Tourette disorder in children

• Tourette disorder (TD) is a neurological disorder. It affects more boys than girls.

• The disease causes repeated tics. These are sudden, uncontrolled vocal sounds or muscle jerks.

• Symptoms of TD often begin between ages 5 and 10.

• TD 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).

• Some children may not need treatment. A child with TD can usually function well at home and in a regular classroom. In some cases, a child may need special classes, psychotherapy, or medicine.

• A family with a history of Tourette disorder should speak with a geneticist or a genetic counselor.

Next steps

Tips to help you get the most from a visit to your child’s healthcare provider:

• Know the reason for the visit and what you want to happen.

• Before your visit, write down questions you want answered.

• At the visit, write down the name of a new diagnosis and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you for your child.

• Know why a new medicine or treatment is prescribed and how it will help your child. Also know what the side effects are.

• Ask if your child’s condition can be treated in other ways.

• Know why a test or procedure is recommended and what the results could mean.

• Know what to expect if your child does not take the medicine or have the test or procedure.

• If your child has a follow-up appointment, write down the date, time, and purpose for that visit.

• Know how you can contact your child’s healthcare provider after office hours. This is important if your child becomes ill and you have questions or need advice.

Online Medical Reviewers:

• Dan Brennan MD
• Joseph Campellone MD
• Raymond Kent Turley BSN MSN RN