FAQ & Links

FAQ

General

Is there a cause for Tourette Syndrome?
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Tourette Syndrome (TS) is an inherited neurological condition. Brain scanning has shown that there are some parts of the brain that function differently or have a slightly different size e.g. some of the structures in the motor circuits that control movement. There is a suspected imbalance in the function of brain neurotransmitters (chemical messengers in the brain that send signals between nerve cells) including dopamine, and probably others. Tics often run in families however there does not seem to be a single gene that causes TS or can be tested to diagnose it. It has been suggested that along with genetics there may be factors in the environment as the brain is developing which may interact with genetic predisposition to influence the risk of developing tics.

What treatment is available for each generation?
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Once TS has been diagnosed there can be treatment and management offered.Behavioural therapies provide tools for helping a person learn ways to understand their tics and perhaps with strategies learn to control and manage some of their tics, especially aimed at the most problematic or painful ones.There are medications which can be used to help reduce the frequency and/or intensity of tics for a period of time. Some treatments and therapeutic approaches aren't for everyone, and with each being approximately 50% effective, it's important that every individual makes choices for themselves or their child, based on their personal experience. Other ways of managing symptoms might include ranging from diet, yoga, meditation, exercise to complementary therapies.  While there is little research evidence for such lifestyle changes and management some patients report finding them useful.

Are there any complications of these treatments. If so, which ones?
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There can be side effects from medication which have to be carefully monitored by health professionals. So far there have been no side effects reported from behavioural therapies. Neurosurgery of course comes with risks of an operation on the brain and have to be discussed with a healthcare provider. More research is needed for this condition and how to improve its management and treatment.

What tics occur most often in patients?
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Tics usually start in childhood around the age of six to seven years and tic symptoms often fluctuate in severity and frequency.  Although the nature of tics is that they come and go, such patterns are also influenced by environmental factors including stress, excitement and relaxation. Tics can occur in nearly any part of the body and in any muscle; some individuals report of ‘internal tics’ such as deep abdominal muscle tension and ‘stomach tics’ The biggest misconception around TS is that everybody with the condition swears.  Coprolalia is the clinical term for tics that produce socially unacceptable words; and only approximately 15-20% of people with TS have this symptom.

What are the phenomena in children with TS?
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It affects one school child in every hundred and is more common amongst boys. The key features are tics – involuntary sounds and movements, which must be present for at least 12 months to meet the diagnostic criteria. Up to 85% of people with TS will also experience co-occurring conditions and features which might include Attention Deficit Hyperactivity Disorder (ADHD), Obsessive Compulsive Disorder (OCD), and Anxiety.  Tics usually first appear at around the age of 5 (can be younger or much older than this). These conditions often overlap and run in families.  The key features are tics – involuntary sounds and movements, which must be present for at least 12 months to meet the diagnostic criteria.  As with other neurological conditions, TS is more prevalent in boys.Currently there is no technology that can predict how TS might affect someone long-term. It is thought that approximately half of children with a TS diagnosis will see a significant reduction in their symptoms as they approach adulthood. For some people, living with TS will continue throughout their life, but symptoms are likely to wax and wane (a term often used to describe the coming and going of tics).

Development

What are the effects on cognitive development?
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There are no effects on cognitive development but there can be challenges to a child’s learning because of their tics affecting concentration in class or them missing instructions. These challenges can be helped by making adaptations for the child in class – which already occurs for other conditions such as autism. What is important is that the child is spoken with to decide what will help them in class before they are in the classroom.

What are the effects on motor development?
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No effects on motor development, but people often report that there is pain from tics. This is also an under-investigated area which needs more research. There may be damage to soft tissue, cartilage etc when someone has tics for many years and this has affected their body.

What are the effects on emotional & social development?
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There is no reason why social and emotional development should be effected. However TS often has co-occurring conditions such as ADHD and OCS that come with it – these can often be more problematic than the tics. Unfortunately the stigma and misunderstanding associated with TS can be problematic. We need to raise awareness and understanding for those people with tics

Long term

Can people with TS lead "normal" lives?
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Yes of course and there are many examples. Accepting tics, understanding what they are and being able to explain them to others (if necessary) is an important part of living with tics. Although there are many people whose tics subside after adolescence there are some who live with tics for their whole life. There are more and more examples of famous people we can show who have Tourette Syndrome – Billie Eilish, Lewis Capaldi, Seth Rogan, Lele Pons etc

Would this neurological disease have a long-term negative effect on the body?
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There is some recent research which suggests that suicide is higher in people with tic disorders such as Tourette Syndrome or that they have a higher degree of increased risk of a higher degree of increased risk of metabolic and cardiovascular disorders there does seem to be some link between mortality risk in a nationwide cohort of individuals with tic disorders and with Tourette Syndrome. More research is needed into this.

Where can I go?

Useful links

In general, every child psychiatrist in Flanders has experience with developmental disabilities and should be able to assist you with a diagnosis.
On the website of the Flemish Association of Clinical Psychologists you will find a list of all Clinical Psychologists affiliated with the VVKP with a specialization in Tourette's (according to the VVKP).

On the website of the Belgian Federation of Psychologists you will find a list of all psychologists affiliated to the BFP with a specialization in Tourette's disease (according to the BFP).

Here is a list of places known to Iktic-Jetique where you can get a diagnosis and treatment:

UZ Leuven

Marina Danckaerts, Child Psychiatrist

UZ Leuven

Jean Steyaert, Child Psychiatrist

St. Lucas Hospital Ghent

Dr Chris Van der Linden, Neurologist

Mechelen InterDisciplinary Group for Developmental Problems Indigo VZW

Dr Luc Roelen Paediatrician

Kapellen

Veerle Jacobs, Psychologist

Brecht

Erik Buelens, Psychologist

Hasselt
De Psychologie Praktijk

Jan Vandormael, Clinical psychologist

Vicky Gielen, Clinical psychologist

Wenduine

Ann Florizoone, Psychotherapist

Websites

CPRI The Brake Shop

This is a website designed to help young people with ‘leaky brake’ disorders – neurological disorders affecting disinhibition. There is a 6-part lecture series for adults (or older young people), and a toolbox of different videos for young people.

Great Ormond Street Hospital

Specialist clinic that have drawn together a comprehensive Tourette syndrome information pack

TAA

Tourette Association of America

Tourette Canada

Tourettes Action UK

ACAMH UK

Association for Child and Adolescent Mental Health

ESSTS

European Society for the Study of Tourette syndrome

TTAG

Tics and Tourette's across the Globe

BTTI

Behavioural Therapy for Tics Institute