Tourette's Syndrome

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, has no purpose and, in general, you cannot help doing. 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 several of his patients 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 onto 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 also.

Neurological. Some studies have shown that there are some minor anomalies 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 chemicals called dopamine. There is not a lot of information available about the detail or significance of these changes.

Environmental. Though 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 birthweight. There is also possibly a connection with a particular infection with the streptococcal germ in some children with Tourette’s. 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, though it varies how mild or severe it is. It is up to nine times more common in boys than in girls.

What are the symptoms of Tourette’s syndrome?

The main symptom is multiple (many) tics. These are classified as either motor (movement) or vocal tics.

• Motor tics include things such as blinking, head turning, head nodding, kicking, mouth pouting, mouth opening, mouth twitches, etc.
• Vocal tics include 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 go away 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 social function. The condition begins before 18, most commonly aged 5-7. The tics are often most severe between 9 and 11 years of age.

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, and 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 saying 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 in 10 children 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

• Obsessive compulsive disorder or obsessive compulsive behaviour (OCD/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. This occurs 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 problem.

How is Tourette’s syndrome diagnosed?

There is no test for Tourette’s syndrome. The diagnosis 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 specialist neurologist (a doctor with a special interest in the brain and nervous system). 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?

Psychological ('talking') 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, hypnotherapy and social skills group training. 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 a lot of evidence that if parents and children with Tourette’s are well informed about the condition, then the child will generally do much better. It is recommended that you get in 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 school teacher and others who are involved in your child’s care are 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.

Medication

In more severe Tourette’s, medication can sometimes help to reduce the occurrence of tics. The drugs that are used include haloperidol, risperidone, pimozide, clonazepam and sulpiride. The aim of treatment with medication 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 are also treated and managed well.

Other treatments

The use of surgery in Tourette’s syndrome is quite controversial and is generally not recommended, except under extreme circumstances. New treatments such as deep brain procedures are being trialled for the treatment of Tourette’s but are not an approved treatment at this stage.

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 disease 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 extravagence, 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.

For further information and support

Tourette’s Action

Southbank House, Black Prince Road, London, SE1 7SJ
0845 458 1252 Web: www.tourettes-action.org.uk