FAQ & Links

FAQ

General

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.

Does everyone with tics have Tourette syndrome?
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No! In fact, 1 in 8 children will have some form of tics in their childhood, so it's pretty normal to have them for a while. If someone has tics for over a year, we start talking about a tic disorder. The diagnostic criteria for Tourette syndrome, according to the DSM-V, are:

  • Having at least one vocal and two motor tics
  • For over a year
  • Starting before the age of 18
  • With no other possible causes
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 are the phenomena in people with TS?
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It affects one person in every hundred and is more commonly diagnosed in 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.

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).

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.

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.

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.

What are the effects on emotional & social development?
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There is no reason why social and emotional development should be affected. However TS often has co-occurring conditions such as ADHD and OCD that come with it – these can 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.

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.

Coping with Tourette Syndrome

Many more "how to cope with" situations will be added!
If you have an idea on a specific situation that you’d like to see added, send us a message at info@iktic.be.

Where can I go?

Experts

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 or/and treatment:

Brecht

Erik Buelens

Psychologist

Diest/Kuringen/Lanaken/As

Mudico

Child psychiatrist & psychologist

Gent

Neurologie UZ Gent

Ghent

Chris Van der Linden

St. Lucas Hospital Ghent

Neurologist

Gistel

Claudia Ipskamps

Praktijk Elim

Counselor

Hasselt

Psychologie Praktijk

Clinical psychologists

Jan Vandormael (email)

Vicky Gielen  (email)

Kapellen

Veerle Jacobs

Psychologist

Leuven

Marina Danckaerts

UZ Leuven

Child Psychiatrist

Leuven

Jean Steyaert

UZ Leuven

Child Psychiatrist

Leuven

UZ Leuven

Leuven

Peter Emmery

Child psychiatrist

Liège

Michel Gonce

Neurologist

Mechelen

Luc Roelen

Mechelen InterDisciplinary Group for Developmental Problems Indigo VZW

Paediatrician

Schaerbeek/Auderghem

Priscilla Van Meerbeeck

Neurologist

Ukkel

Marijke Bisschop

Behavioural therapist

Watersmael-Boitsfort

Maëlle Brohee

Clinical neuropsychologist

Wenduine

Ann Florizoone

Psychotherapist

Woluwe-Saint-Pierre

Perrine Collard

Psychologist

Zutendaal

Sofie Crommen

Praktijk voor kinderpsychiatrie

Child psychiatrist

Map

View available experts and specialised clinics in Belgium on the following Google map. (continuously updated!)

Click ↓

Websites

Association for Child and Adolescent Mental Health

UK

CPRI The Brake Shop

Canada

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.

European Society for the Study of Tourette syndrome

The European Society for the Study of Tourette Syndrome (ESSTS) aims to coordinate pan-European and transcontinental efforts and collaboration on the study of Gilles de la Tourette Syndrome (TS) & associated disorders, and to provide a platform for global outreach and educational activities.

TS-Patient Associations around the world: World Directory

Great Ormond Street Hospital

UK

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

Tics and Tourette's across the Globe

Global

TTAG is a global umbrella association representing Tics and Tourette Syndrome associations.

Tourette Association of America

USA

Tourette Canada

Canada

Tourettes Action UK

UK