What is Tourette Syndrome or TS?
Tourette Syndrome is a genetic, neurochemical disorder generally defined by motor and vocal tics that generate involuntary muscle movement.
These tic movements range from random meaningless fidgeting and vocalizations to actions that mimic obscene gestures (coprophalia) and language (echolalia), a situation often misinterpreted as rude and angry misbehavior which has no doubt compromised the public's understanding of the syndrome.
There are several myths and misconceptions about the disorder.
The syndrome is often associated with rage or aggressive behavior which has been reported as a clinical problem in about 25 to 40 % of TS patients.
Research, however, suggests that aggressive behavior in children with TS is due mainly to the comorbid existence of ADHD ( Attention deficit Hyperactive Disorder) or OCD (Obsessive-Compulsive Disorder). Patients with TS alone have minimal symptoms of aggression.
In general, tics in TS manifest as simple, meaningless sounds or compulsive repetitions of words or parts of words. Sometimes, they appear as rapid speech and stuttering. These are often accompanied with jerky movements and gestures, running the gamut from blinking eyes to body gyrations on the floor.
Some TS children describe tics as uncomfortable, tingling sensations that demand relief. It is virtually impossible for them not to "tic," as it is for us not to sneeze. Like a sneeze or a cough that has to be released,tics have to be honored in their own right.
In fact, trying to suppress the tic creates an even bigger problem. Suppression does not stop the tic; it merely postpones more severe outbursts.
Moreover, attempting to suppress tics is counterproductive; it is exhausting and distracting for the TS child especially in the classroom. Much more practical would it be to educate the general population on the nature of tics in Tourette Syndrome.
Rather than suppression,the TS child should try the technique of diversion--that is, to concentrate so hard on something else that it takes the mind off the tics.This could be reading a passage ( studies show that TS children are intellectually bright, often strong in grammar), solving math problems or writing in a journal.
Tics and involuntary gestures seem to intensify during the adolescent years; however, they become less frequent as the teen matures into adulthood. Many Tourette Syndrome patients report little or no tic activities after 30 years of age.
The name "Tourette Syndrome" comes from Dr. George Gilles de la Tourette, a French neurologist who first described the condition in 1855.
The syndrome usually begins in childhood, occurring in boys more frequently than in girls. Other disorders are sometimes associated with the syndrome--OCD, ADHD, ODD ( Oppositional Defiant Disorder)as well as some mood conditions like depression.
It is estimated that 10 in 2000 people experience TS.It is not a degenerative disease; nor does it compromise intelligence.While there is no cure for the disease, TS individuals can lead relatively healthy lives.
New research into the cause and behavior of this disease has spawned many effective management strategies through parent management training and cognitive behavior therapy. Seeking professional help can do much for the creation of a balanced and productive life.
What Causes Tourette Syndrome?
Genetics do play a role as one of the causes. Researchers are still in the process of identifying the gene or genes responsible for the condition. A person with TS has a 50% chance of passing the gene(s) to his children. TS seems to be expressed more overtly in males who are more likely to exhibit tics than females.
Even members of the same family do not express the same symptoms. There is such a variance in the expression of this condition that the word "syndrome" is used rather than "disorder."
A syndrome refers to a constellation of symptoms that vary in degree of manifestation. Genetic studies of twins with TS also suggest that environmental factors interacting with genetic vulnerability may be a causal catalyst of the syndrome.
Research also implicates abnormal activity in brain neurotransmitters (dopamine,serotonin, norepinephrine) as well as abnormalities in brain regions that manage communication and connection between neurons.
Some association between strep infections and TS have been made although these have not been proven or validated.
What Are Treatment Options?
Some types of medication can help reduce tic activity. However they are drugs that can produce serious side effects. There has been a lot of controversy regarding the use of stimulants for patients with Tourette Syndrome.While medication is required in some cases, not every Tourette Syndrome child needs it because of the discrepancies in symptom expression.
Many children do quite well with parent management training. For children who do need more intense intervention, management that is individualized with a combination of medication, psychotherapy and behavior modification has proven to be very effective.
Parent Management Training
Tourette Syndrome children with ADHD or OCD often behave explosively. Because tic movements often imitate rude and offensive gestures, parents have focused more on dealing with the tic issue rather than on the behavioral ones.
A study published in 2006 showed that parent management training has a powerful effect on the disruptive behavior of children with TS.
One group of parents was taught 3 main strategies for behavior management:
a) consistency in their reactions to explosions and outbursts
b) clarity in explanation of consequences
c) choice of positive, rather than negative, consequences.
A second group of parents received no training whatsoever. Results tabulated at the end of the 10 week study showed that the trained parents reported 32% fewer disruptive incidents than the un-trained parents.
Cognitive Behavior Therapy
Cognitive Behavior Therapy which advocates changing behavior through changing thought patterns is effective for anxiety disorders and TS.
One therapy called "Habit Reversal Training" is based on research showing how habitual patterns and motion sequences can be changed and relearned.
By helping patients identify the times and conditions of their tic urges,therapists can teach TS patients practices that can side-track or break their habitual responses.
Much like OCD patients who can retrain their brains to adapt to new behavioral cues, TS patients can learn to break their own pattern of vocal and motor tics by practicing a different response.
In fact, a specialized form of behavior therapy known as CBIT or Comprehensive Behavioral Intervention for Tics, has been found to be particularly effective for reducing chronic tics and tic-related problems in children and teens.
In essence, CBIT is a self-management strategy without the use of medication. Children with Tourette Syndrome are taught to recognize when a tic was about to occur and deliberately engage in diverting their desire to "tic" with an action incompatible with the "tic." Instead of surrendering to the tic, a child might sing or jump up and down until the unwanted sensation passed.
Parents are also encouraged to help their children with these self-management techniques in order to minimize the stress these children feel in their attempts to control the tics.
A study done at UCLA using the CBIT strategy has produced a success rate of 53%. More information can be found here.
Deep Brain Stimulation
Deep Brain Stimulation has generated much publicity. Early research suggests that it is effective for victims of severe and disabling tics. Essentially deep brain stimulation is the surgical implantation of electrodes in the brain connected to a pulse generator in the upper chest by a thin cable placed under the skin.
The purpose is to deliver electrical stimulation to areas in the brain involved in controlling movement. While the technique has been successful with four of five Tourette Syndrome patients, much more research needs to be done to determine its safety and effectiveness for the TS population.
A new study also shows that children and teens with Tourette Syndrome can reduce their symptoms through self-hypnosis with the aid of videotape training. Children were taught to practice self-hypnosis technique three times a day.
They learned to relax into a "highly focused" space where they engaged in learning how to switch on and off their tic sensations. Virtually all the participants were able to increase their control of tic sensations after a few sessions.
More information can be accessed
Disclaimer: The above information is meant only to inform and should never displace professional consultation.
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