May is Tourette’s Awareness Month! Tourette syndrome (TS) is a nervous system disorder. It causes people to have repetitive movements or sounds that 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. Educating yourself about this condition can go a long way in lessening your fears.
How did Tourette syndrome get its name?
Tourette is simply the last name of a French doctor who is credited with discovering the condition. In 1885, Gilles de la Tourette reported nine patients with the classic symptoms of this disorder. The condition was then named after him.
What are tics?
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 the media as people blurting out swear words. However, cursing and other outbursts happen in less than 15% of patients.
Usually, tics start gradually. In fact, your child may have had them for a long time before you notice. Sometimes tics are so mild, they’re only found when a child is seen for other medical issues.
Examples of motor tics:
- Eye blinking
- Head jerking
- Facial grimacing
- Eye movements
- Mouth opening
- Shoulder shrugging
- Knuckle cracking
- Abdominal wall jerks
- Little jumps while walking
Examples of verbal tics:
- Sniffing
- Sneezing
- Throat clearing
- Barking and other animal sounds
- Squeaking
- Snorting
- Repeating words or phrases
- Uncontrollable swearing
Examples of unusual tics:
- Arching
- Vomiting
- Ear movements
- Swallowing air
- Movements of the soft palate (in the back of the throat)
- Blocking tics such as freezing, fixed staring, and certain postures that aren’t associated with another condition.
Tics are categorized as either simple or complex:
- Simple tics: These tics only involve certain muscle groups in the body. They can be motor or vocal tics. For instance, kids might shrug their shoulders (motor) or grunt (vocal).
- Complex tics: These tics often involve several groups of muscles. Examples of complex tics are jumping or twisting (motor) and repeating words or phrases (vocal). Sometimes they’re a combination of motor and verbal tics.
Tics typically get worse when your child is anxious, stressed, excited, tired or angry. It’s not common, but tics can also happen while your child is sleeping. Keep in mind that tics are usually temporary and mild.
Some kids feel they can briefly control their tics. But the urge only grows until it finally explodes. The tic has to be released. When your child is focusing their attention on something else, their tics may improve.
It might be tempting, but don’t ask your child to stop their tic behaviors. This just creates more tension for them and can actually make the tics worse.
It’s best not to point out or comment on your child’s tics either. This might make them more self-conscious, which could also make the tics worse. Instead, work at making your child’s environment a place where their tics are seen as natural and normal.
How is Tourette syndrome diagnosed?
There are no specific tests to diagnose TS. This includes laboratory tests such as blood tests, magnetic resonance imaging (MRI) or electroencephalogram (EEG). But sometimes these tests may be used to rule out other conditions that may be causing your child’s symptoms.
Healthcare professionals use the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) to help diagnose TS.
Here are the symptoms a child must have for a diagnosis of Tourette syndrome:
- 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 another medical condition such as seizures, Huntington’s disease, or post-viral encephalitis
Tourette syndrome is usually mild. Serious comorbidities (additional health conditions), complications and other related problems are rare.
What causes Tourette syndrome?
No one knows exactly what causes Tourette syndrome. Experts think it’s a combination of factors, including:
- Genetics
- Environment
- An imbalance in brain chemicals called neurotransmitters
Tourette syndrome usually starts between the ages of 5 and 10 years. However, it can affect infants and adults too. It’s three to five times more common in boys than girls. Boys are also four times more likely to develop TS if their father has it.
Studies show TS affects 6% to 12% of people in all races and ethnic groups. It’s more common in people with autism spectrum disorder and Fragile X syndrome.
Many children with Tourette syndrome have other behavioral conditions too, including:
- Attention-deficit/hyperactivity disorder (ADHD)
- Obsessive-compulsive disorder (OCD)
- Anxiety
- Depression
- Learning problems
- Behavioral problems
- Sleep disorders
Tourette syndrome treatment
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 their schoolwork, their social life or their behavior, for example, there are some treatment options that may help.
Cognitive behavioral intervention & talk therapy
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.
Medication & other potential treatment options
Medications can’t completely get rid of Tourette syndrome symptoms.There are many different drugs used to treat tics. Your doctor will decide which is best for your child based on their other health conditions, such as depression or ADHD, and their age. Some of the medications that may be used to treat tics include:
- Clonidine
- Guanfacine
- Clonazepam
- Baclofen
- Topiramate
- Levetiracetam
- Pimozide
- Tetrabenazine
- Fluphenazine
- Risperidone
- Aripiprazole
- Olanzapine
- Haloperidol
- Ziprasidone
- Quetiapine
- Sulpiride
- Tiapride
- Pergolide
- Cannabis
- Botulinum toxin injections
Deep brain stimulation is an option for severe tics that don’t respond to other treatments. More research needs to be done on how effective and safe DBS is for children with Tourette syndrome.
What is the outlook for children with Tourette syndrome?
In general, there’s not much to fear when it comes to Tourette syndrome. Children with this disorder can live productive lives. They have a normal life expectancy.
About 30% of children with Tourette syndrome get better in adolescence or early adulthood. Another 30% carry their tics over into adulthood. Only a third get worse. But from those, just 2% to 5% need significant support in life.