Tourette Syndrome

Tourette syndrome (TS), sometimes called Tourette disorder (TD), is a neurological disorder characterized by both motor and vocal tics. Tics are abrupt, purposeless, and involuntary vocal sounds or repetitive motor movements. Symptoms of TS usually begin between the ages of 5 years and 10 years, and begin with mild, simple tics involving the face, head, or arms. With time, tics may become more frequent and increase in variety, involving more body parts, such as the trunk or legs, and often become more disruptive to activities of daily living (ADLs).

Researchers are still working to understand the genetic and environmental factors that lead to Tourette syndrome. 

As we continue to understand Tourette Syndrome, we know that there are other comorbidities identified that are often associated with TS:

• ADHD
• OCD
• Behavioral/Conduct issues
• Anxiety
• Learning disabilities
• Social skill/social functioning difficulties
• Sensory processing issues
• Sleep disorders

A diagnosis of TS is generally made before the child reaches his or her 18th birthday. In the majority of cases, a child is diagnosed around the age of 7.

It is estimated that one out of every 160 children in the U.S. between 5-17 years old has TS, and one out of every 100 children has TS or another tic disorder.
TS affects more males than females.

Tic behaviors seen in TS change over time and vary in frequency and complexity. The following are the most common tic behaviors associated with TS. However, each child experiences symptoms differently. Symptoms may include motor and vocal tics. Motor and vocal tics are categorized as either simple or complex.

• Simple motor tics include brief rapid movements that involve only a single muscle or localized group. Examples of simple motor tics include:
  • Eye blinking
  • Head jerking
  • Shoulder shrugging
• Complex motor tics involve a cluster of simple actions or a more coordinated sequence of movements. Examples of complex motor tics include:
  • Purposeful appearing facial or body movements
  • Touching
  • Hitting
  • Jumping/Hopping
• Simple vocal tics include various sounds and noises:
  • Grunts
  • Barks
  • Sniffs
  • Throat clearing
• Complex motor tics include various vocalizations:
  • Repetition of words; syllables, phrases, echolalia (repeating other person’s words) 
  • Palilalia (repeating one’s own words)
  • Coprolalia (obscene words)

A pediatrician, child psychiatrist, or a qualified mental health professional usually identifies TS in children and adolescents. A comprehensive evaluation of the child or adolescent's psychological, social, and educational status is recommended, as well as a thorough medical, developmental, and family assessment. A detailed history of the child's behavior from parents and teachers, in addition to observations of the child's behavior, contribute to making the diagnosis.

• Tourette Syndrome
  • Both motor and one or more vocal tics 
  • Tics may vary in frequency but have persisted for greater than 1 year since first onset 
  • Onset prior to age 18
  • The disturbance is not attributable to the effects of a substance or another medical condition
• Provisional Tic Disorder
  • Motor and/or vocal tics present for less than 1 year
  • Tics started prior to age 18 
  • Not met the criteria for TS, persistent (chronic) motor, or vocal tic disorder
• Chronic Motor or Vocal Tic Disorder
  • Tics present for more than 1 year
  • Tics started prior to age 18

Specific treatment for Tourette syndrome will be determined by your child's health care provider based on:

• Your child's age, overall health, and medical history
• Extent of disruption caused by tic behavior
• Your child's tolerance for specific medications or therapies
• Expectations for the course of the disorder
• Your opinion or preference

The effect of symptoms on the child's or adolescent's self-concept, family and peer relationships, and classroom participation determines what needs are to be addressed in treatment. In many cases, TS is not disabling. Development may proceed normally, and there is no need for treatment. However, when tics interfere with functioning or school performance, and/or if there are other disorders also present (such as OCD, or attention deficit/hyperactivity disorder), some effective medications are available. Children with TS can generally function well at home and in a regular classroom. If they have accompanying emotional or learning problems, they may require special classes, psychotherapy, and/or medication.

Medications for Tourette syndrome

• Clonidine & Guanfacine
• Topiramate/Topamax
• Antipsychotic medications
• Tetrabenazine or VMAT2 inhibitors

Surgery for Tourette syndrome

In severe cases, when medication does not provide adequate relief, deep brain stimulation may be used. This treatment involves surgical implantation of electrical leads in the brain, connected to a battery-powered stimulator.

Studies show that families play an important role when it comes to Tourette syndrome.

You can help your child with Tourette syndrome by:

• Understanding their symptoms and supporting them if they are struggling
• Accepting them for who they are and loving them unconditionally
• Supporting a good routine and structure for them
• Empowering them to use their voice to advocate for themselves, ask their doctors questions and take an active role in their treatment
• Helping them find activities they enjoy where they can direct their mental and physical energy
• Connecting with families and others who understand the condition's challenges through support groups