When your Child is Diagnosed with Tourette’s Syndrome

I found myself in a state of panic and despair the day I realized that my little girl of 5 years old had Tourette’s syndrome.  Tourette’s have been made out to be such a horrible illness in the media, where obscenities and swearing is at the order of the day – it would send shivers down any parent’s spine.

What is Tourette’s Syndrome?

TS is an inherited neurological disorder that is shown as sudden, repetitive motor and vocal tics. This one of a few disorders that has to manifest before the age of 18 to meet the diagnostic criteria.

What is a Tic?

The web defines a tic as: A stereotyped , involuntary, spasmodic, nonrhythmic movement or vocalization. Tics are experienced as virtually irresistible although mild forms can be surpressed to some extent. Stress and anxiety typically exacerbate the condition.

Because the face has the most muscles in the body – we find that children that suffer from TS usually show tics in the head and facial area. Repetitive blinking and frowning are very common tics. These tics waxes and wanes over time and usually peaks at the age of 10 years. It has been found that after 10 years of age that there is a steady decline in the prevalence of the tics. Some studies found that after 18 years of age a half to two thirds of TS children show no tics at all.

You can differentiate between simple and complex tics. Simple tics consist of 1 or more movement or vocal tics which seems to have no meaning or significance. Complex tics involve more than one muscle group and seem to have some meaning to the individual.  Complex tics are rare.  Very few children exhibit tics that involve swearing or using obscene phrases, that would actually be the last thing that they would like to utter.

Who is at Risk of Having Tourette’s Syndrome?

A child who has a parent with TS, have a 50% chance of having inherited the gene for TS.  That does not necessarily mean that your child will manifest the symptoms of TS.  About 50% of girls born with the gene will never show any signs or symptoms of TS.  A boy born with the gene however, has a 99% chance of manifesting TS symptoms.

What other Associated Behavior do we find?

  • Obsessive Compulsive Behavior
  • Attention Deficit Disorder (up to 60% of children with TS have ADD/ADHD)
  • Problems with impulse control
  • Learning Disabilities
  • Sleeping disorders
  • Depression

What makes these Children Unique?

Different studies showed that these children are visually oriented and often excel in activities where they have to analyze pictures.  It has been found that TS children are quicker at mental grammar skills and are often unusually intellectually gifted children with no cognitive deficits.  TS children tend to be more introspective than other children of their own age and find themselves perplexed with how their own minds work.

Treatment for TS

Pharmaceutical treatment for TS is very controversial – the antipsychotic medicines’ side effects often outweigh the benefits of it in reducing the frequency of the tics. These medicines often lead to sedation and mental dulling.  Many physicians feel that if the disorder is not debilitating, treatment should focus on addressing the associated conditions first.

Psychological intervention can help your little one with dealing with the knowledge that she is different from other children and help alleviate depression and self esteem problems.

Occupational therapy can help to address associated attention deficit and hyperactivity problems that can cause problems in the class room and academic lagging.

Most important is that a child with TS should not feel like she is constantly under parental and teacher scrutiny.  It does not help to ask her to stop ticking or change her behavior. She is not capable of doing it  and it will only lead to more anxiety which unfortunately will have the effect of more tics appearing.

Love and accept your child for who she is and enjoy her vivid imagination and uniqueness that comes with TS!