Information & Support

Frequently Asked Questions

The cause has not been definitely established, although current research presents considerable evidence that the disorder stems from the abnormal metabolism of at least one brain chemical (neurotransmitter) called dopamine. Undoubtedly other neurotransmitters are also involved.

Studies suggest that TS is inherited as a dominant gene that may produce different symptoms in different family members. A person with TS has about a 50% chance of passing it on to his/her children, however it may not appear as a recognisable disorder to that extent. The gene may express itself as TS, as a milder tic disorder or as obsessive-compulsive symptoms with no tics at all. It is now known that a higher than normal incidence of milder tic disorders and obsessive-compulsive behaviours occur in the families of TS patients. In some cases, TS may not be inherited, and is identified as sporadic TS because the cause is unknown.

Postponement or substitution of TS symptoms is a skill that some people are able to master. It requires considerable energy and concentration to inhibit vocalisations or motor movements for even a few minutes. Family members, teachers and co-workers must be understanding and compassionate when this cannot be accomplished. To avoid embarrassment and ridicule, in certain social situations some children and adults with TS often try to inhibit their symptoms. Symptoms may however emerge more explosively when they arrive home or are able to shelter themselves in private surroundings where they feel more comfortable. This phenomenon can create a diagnostic problem for physicians who often do not observe tic symptoms during examination.

No, TS is a neurological disorder. Secondary psychological problems (e.g., depression) may however arise from persistent difficulties in coping with the disorder and society’s reaction to its unique symptoms. Some behavioural difficulties that may be a part of the syndrome (i.e., poor attention span, compulsiveness, aggressive outbursts) can also cause significant adjustment problems. In some cases psychological counselling may be needed to help a person with TS adjust, come to terms with TS and build coping skills.

The diagnosis is made by observing the symptoms and by evaluating the history of their onset. No blood analysis, x-ray or other type of medical test exists to identify TS. A doctor may however order an EEG, CAT scan or certain blood tests to rule out other ailments that could be confused with TS.

Not yet, but medication can be effective to control some of the symptoms in some cases. Education of the individual, family and friends on the disorder and learning management techniques can help reduce symptoms.

They certainly can, and the great majority do. People with TS do not become less intelligent. Many reach high achievement in the areas of academia, business and sportsmanship.

They certainly can, and the great majority do. People with TS do not become less intelligent. Many reach high achievement in the areas of academia, business and sportsmanship.

Some people experience periods where the symptoms seem to disappear, others experience a marked improvement in their late teens or early twenties.

The term typical cannot be applied to TS. The expression of symptoms covers a spectrum from very mild to very severe. TS is an individual and complex disorder.

 

Treatments for Tourette Syndrome may consist of pharmacological or non-pharmacological or a combination of both.

There are several drugs, which can reduce the symptoms of TS for many people. Unless symptoms substantially interfere with a person’s life, medication may not be necessary. None of the medication currently available for treatment of TS will entirely eliminate all symptoms. Instead symptoms may be reduced, sometimes substantially, but they will continue to wax and wane, and they will commonly appear more pronounced during stressful periods.

A behavioural treatment with proven efficacy called CBIT has been gaining increasing interest:

CBIT — Comprehensive Behavioural Intervention for Tics

Listen to podcast here ‘What are Tics and What is CBIT?’  by National Tourette Syndrome Association, Inc USA.

Download the free brochure here.

Other non-pharmacological treatments can be helpful. The below book is a starting point as many treatments already in use by psychologists and psychiatrists can be applied to assist with TS.

Where There Is No Child Psychiatrist – eBook

Valsamma Eapen, Philip Graham and Shoba Srinath Published: 2012
Available free of cost as E-book through the Royal College of Psychiatrists as a PDF or as Epub version

http://www.rcpsych.ac.uk/usefulresources/publications/ebooks/ebks/9781908020871.aspx

or through Amazon as free app for kindle readers
http://www.amazon.com/Where-There-Is-Child-Psychiatrist/dp/1908020482

Whilst children with TS as a group have the same IQ range as the population at large, many have special educational needs. It is estimated that many may have some kind of learning problem. That difficulty, combined with attention deficit and the problems inherent in dealing with the tics, may call for special educational assistance. TSAA has resources to address these problems.

Yes, particularly in instances when the symptomatology of the condition is viewed by some people as bizarre, disruptive and worrying. Not infrequently, it provokes ridicule and rejection by peers, neighbours, teachers and even casual observers. Parents may be overwhelmed by the strangeness of their child’s behaviour. The child may be threatened, excluded from family activities, and prevented from enjoying normal interpersonal relationships due to ignorance of the disorder. These difficulties may become greater during adolescence, an especially trying time for young people, and even more so for a person coping with a neurological problem. To avoid psychological harm, early diagnosis and treatment are crucial. The opportunity for parents and young people to gain mutual support can be very important. TS is not well known, but as more doctors become aware of the symptoms, undiagnosed cases are likely to decrease in the future. Early intervention certainly leads to better outcomes.

We don’t know for sure but recent research suggests as many as 1 in 200 people. The current prevalence rate in children is 1 in 100.

Dr George Gilles de la Tourette (1857 – 1904) was a neurologist living in France. He was the first to identify the syndrome by giving a description of the Marquise de la Dampierre, a noble woman whose symptoms included copralalia. She lived to the age of 86.

TSAA is a voluntary and non-profit organisation consisting of people with TS, their families, health and education professionals and other interested and concerned people. The association disseminates educational materials in the fields of health care, education and welfare service, provides telephone counselling and operates support groups. We support parent advocacy and other services to help families cope with problems that may occur with TS. The association regularly publishes a newsletter and organises workshops. The Association keeps a register of doctors who are experienced in diagnosing and treating TS. We continue to work towards better treatments and improving the overall quality of life for people with TS.