Tourette's syndrome is a condition that causes you to make involuntary movements or noises called tics. It starts in childhood and is associated with various other problems such as behavioural problems and attention deficit hyperactivity disorder (ADHD). It can often be well managed with psychological treatments and sometimes with medication.
What is Tourette's syndrome?
Tourette's syndrome is a disorder that starts in childhood. The prime symptom is to have repeated tics. A tic is a sudden movement or sound that is repeated over and over. A tic has no purpose and, in general, you cannot help doing it. For example, repeated blinking, repeated throat clearing, repeated head nodding, etc. Tics are very common in children and usually last less than one year. However, children with Tourette's syndrome have many types of tics of sudden movements and noises and the tics persist for more than a year. The syndrome is named after the person who described the condition in 1885, Dr Georges Gilles de la Tourette.
What causes Tourette's syndrome?
The cause is not known. There are various theories which include the following:
Genetic. It is generally believed that abnormalities in genes are responsible for most cases of Tourette's syndrome. Genes are passed on to a child from each parent and determine what we look like, how our body functions and even what diseases we may get. A child is more likely to develop Tourette's syndrome if they have a father, mother, brother or sister with it.
Neurological. Some studies have shown that there are some minor defects in the structure and working of the brain in children with Tourette's syndrome. Studies also suggest that there may be a problem with one of the brain's chemicals called dopamine. There is not a lot of information available about the detail or significance of these changes.
Environmental. Although it has not been proven, there is some evidence that problems during pregnancy or childbirth may increase the risk of a child developing Tourette's syndrome. This may include problems such as prolonged labour, high levels of maternal stress in pregnancy, or babies with very low birth weight. There is also possibly a connection with a particular infection with the streptococcal germ in some children with Tourette's syndrome. This is a fairly recent discovery and not very much is known about the link.
How common is Tourette's syndrome?
Tourette's syndrome is much more common than previously thought. About 1 in 100 children have the condition, although it varies in how mild or severe it is. It is about three times more common in boys than in girls.
What are the symptoms of Tourette's syndrome?
The main symptom is many (multiple) tics. These are classified as either movement tics (motor tics) or vocal tics.
- Motor tics include movements such as blinking, head turning, head nodding, kicking, mouth pouting, mouth opening, mouth twitches, etc.
- Vocal tics include things such as throat clearing, coughing, sniffing, yelling, or making animal sounds.
Tics occur very commonly in children who do not have Tourette's syndrome. In fact, up to 1 in 5 children will develop a tic at some stage. These tics are often minor and of little significance, usually come and go and often disappear within a year.
In Tourette's syndrome, a child develops multiple tics which occur many times a day (often in bouts) and the tics last for more than one year. The tics cause some degree of difficulty in school or socially. The condition begins between 2-14 years of age (the average age is 7).
There are several other symptoms that sometimes occur. These include:
- Coprolalia - the involuntary use of obscenities and swear words. This is perhaps the most famous symptom which the media tend to focus in on. However, this only occurs in about 1 in 10 children with Tourette's syndrome. Note: it must be emphasised that if this occurs, the child cannot help swearing. It is not a reflection on their moral character or upbringing.
- Echophenomena - copying what others say and do.
- Palilalia - repeating your own words.
- Non-obscene socially inappropriate (NOSI) behaviours - such as making inappropriate or rude personal comments.
Are there any other problems?
If a child has Tourette's syndrome they are also likely to have one or more related conditions. It is not clear why these other conditions occur at the same time. Only about 1 child in 10 with Tourette's syndrome has no other associated problem. The most common conditions seen with Tourette's syndrome are listed below with how often they occur in children with Tourette's syndrome.
- Obsessive-compulsive disorder (OCD), or obsessive-compulsive behaviour (OCB). This occurs in about 5 in 10 children with Tourette's syndrome.
- Attention deficit hyperactivity disorder (ADHD, or ADD). This occurs in about 6 in 10 children with Tourette's syndrome.
- Learning difficulties. These occur in about 3 in 10 children with Tourette's syndrome.
- Mood disorders such as depression or anxiety occur in about 2 in 10 children with Tourette's syndrome.
- Conduct disorders. These occur in about 1-2 in 10 children with Tourette's syndrome.
- Self-harming behaviours such as head banging occur in about 3 in 10 children with Tourette's syndrome.
- Behavioural problems. Up to 8 in 10 children with Tourette's syndrome will also have some degree of behavioural problems.
How is Tourette's syndrome diagnosed?
There is no blood test or particular investigation for Tourette's syndrome. The diagnosis is based on the symptoms and is made after a careful discussion with you and your child as well as a physical examination to rule out other disorders. This will usually be done by a doctor with a special interest in the brain and nervous system (a neurologist). Some tests may be done to make sure that there are no other conditions which could account for the tics.
What is the treatment for Tourette's syndrome?
Talking (psychological) treatments
Various psychological treatments can help to ease the symptoms and problems of Tourette's syndrome. These include cognitive behavioural therapy (CBT), habit reversal training and exposure and response prevention therapy. These treatments aim to help the child to recognise and control their tics. Often children are able to learn to suppress the tics during the day at school but will need an outlet to release them at home.
Education and support
There is some evidence that providing parents and children with Tourette's syndrome with information about the condition, results in better outcomes. It is recommended that you make contact with the support group listed below, as they can provide further information on the condition and can even put you in contact with others in the same situation.
It is very important that your child's schoolteacher and others who are involved in your child's care should be informed and educated about the best way to manage this condition. Your child's teacher can have a very positive impact on your child's behaviour and development if they understand the problems that may be present.
In addition to any usual treatments, individual children may respond to different approaches. Parents and teachers can build on whatever works. For example, some children can gain more control of their lives through the medium of dance.
In more severe Tourette's syndrome, medicines can sometimes help to reduce the occurrence of tics. The medicines that are mostly used are from the group known as antipsychotics: haloperidol, risperidone, aripiprazole and sulpiride. The medicine clonazepam - a benzodiazepine - is also sometimes used. The aim of treatment with medicines is to control the tics to a point that will enable your child to function well while minimising side-effects. The tics may not disappear completely.
Management of other conditions
If your child has other conditions present with Tourette's syndrome then it is important that these should also be treated and managed well.
The use of surgery in Tourette's syndrome is only recommended for people with severe symptoms who do not respond to other treatment. Deep brain stimulation using electrodes implanted into the brain has produced encouraging results in limited trials. However, more research is needed to see whether it is safe to be used more generally.
Some other thoughts and controversies about Tourette's syndrome
There are various controversies and differences of opinion about certain aspects of Tourette's syndrome. For example:
- Some people view any treatment to be controversial. Some children and teenagers do not want to change and sometimes side-effects of medication can be worse than the condition itself.
- Some people would argue that it is not necessarily a disease and is a natural part of their personality, which has positive aspects to it. For example, some people with Tourette's syndrome lead vivid lives 'on the edge', with extravagance, and audacity - sometimes with a rich fantasy world.
What is the outlook (prognosis)?
Many children with Tourette's syndrome improve over time. By the time they are adults, in many cases the symptoms have eased considerably or have gone. However, some children with this condition will continue to have marked symptoms into adulthood and, although the tics tend to stabilise over time, some new tics may develop.
Further help & information
Dr Tim Kenny
Dr Nick Imm
Dr Anjum Gandhi