Ask the Pediatrician: What exactly is Tourette syndrome?

Q: I’ve been told my son may have Tourette syndrome. What exactly is this and how worried should I be?

A: Tourette syndrome is a nervous system disorder. It causes people to have repetitive movements or sounds they can’t control. These are known as tics, and they typically start in childhood. There are two types: motor tics and vocal tics.

You may feel anxious if your child is diagnosed with Tourette syndrome. That’s completely understandable, and educating yourself about this condition can go a long way toward lessening your fears.

Tourette syndrome is a type of tic disorder. Tics can be short, fast, sudden or come in clusters. They can also vary in number, frequency, type or severity. They can even disappear for weeks or months at a time. We often see Tourette syndrome portrayed in popular media as people blurting out profane words. This is rare in real life.

Usually, tics start gradually. In fact, your child may have had them for a long time before you notice.

Motor tics include:

  • Blinking
  • Head jerking
  • Grimacing
  • Mouth opening
  • Shoulder shrugging
  • Knuckle cracking
  • Little jumps while walking

Verbal tics include:

  • Sneezing
  • Throat clearing
  • Barking and other animal sounds
  • Snorting
  • Repeating words or phrases

Tics typically get worse when your child is anxious, stressed, excited, tired or angry. Keep in mind that tics are usually temporary and mild.

Some kids feel they can briefly control their tics. But the urge only grows and has to be released. When your child is focusing attention on something else, their tics may improve.

It’s best not to point out or comment on your child’s tics. This might make them more self-conscious, which could also make the tics worse. Instead, make your child’s tics seem natural and normal.

There are no specific tests to diagnose Tourette syndrome, but sometimes laboratory tests such as blood tests, magnetic resonance imaging or electroencephalogram may be used to rule out other conditions that may be causing your child’s symptoms.

Health care professionals use the “Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition” to help diagnose TS.

They look for:

  • Multiple motor tics and vocal tics, though they might not always happen at the same time
  • Tics that happen any times a day (usually in clusters), nearly every day, or off and on, for at least a year
  • Tics that began before age 18 years
  • Symptoms that aren’t from taking other drugs or having anotical condition such as seizures, Huntington’s disease, or post-viral encephalitis

Tourette syndrome is usually mild. Serious health conditions, complications and other related problems are rare.

There is no cure for Tourette syndrome. But many kids don’t need treatment at all. Your child’s symptoms only need to be treated if they’re interfering with life. If the tics affect schoolwork, social life or behavior, for example, there are some treatment options that may help.

The first line of treatment is a therapy called cognitive behavioral intervention for tics. This therapy is highly effective. But it isn’t always easy to get because there aren’t many psychologists trained in it.

Regular talk therapy can help your child learn to relax and cope with stress. If your child has other behavioral conditions, therapy can help with these as well.

Medications can’t completely get rid of Tourette syndrome symptoms, but there are many drugs used to treat tics. Talk to your doctor about which might be best for your child based on other health conditions, such as depression, ADHD and age.

In general, there’s not much to fear when it comes to Tourette syndrome. Children with this disorder can live productive lives and they have a normal life expectancy. Most children with Tourette syndrome get better in adolescence or early adulthood. Only a third continue to have symptoms in adulthood. But from those, very few need significant support in life.

About the writer

Dr. Alcy R. Torres is an associate professor of pediatrics and neurology at the Boston University School of Medicine and is a member of the AAP Section on Neurology.