What is Tourette Syndrome?

High profile coverage of individuals with TS, such as Pete in Big Brother, means many more people are aware of the condition

As recently as probably 10 years ago, few people had heard of Tourette syndrome (TS). Today many more are aware of the condition. In part this is due to high profile coverage of individuals with TS - including the appearance of Pete, a recent housemate on Channel 4’s Big Brother series.

But very often the focus is on the most severe aspects of the condition - for instance the compulsive repetitive swearing and making rude gestures that can be associated with TS.

In fact these symptoms only affect around 15 per cent of children. The majority are more mildly affected. But it can be a really difficult condition to live with, not only for the children who have it, but also for their families.

What is TS?

It’s a condition about which we know remarkably little. The main feature is multiple tics - sudden repetitive movements and sounds.

TS begins in childhood and has phases where it improves and worsens, both in intensity and in how it presents. In some young people, the tics may not be noticed, while in others, the tics can be quite disturbing and embarrassing. Many children and young people can have a considerable decrease in their symptoms and even remission during adulthood.

Attention difficulties and obsessive and compulsive symptoms are often associated with TS and many of those affected are impulsive, often almost seeking out danger. About half of children also have Attention Deficit Hyperactivity Disorder (ADHD).

What causes TS?

We don’t completely understand the cause but an imbalance in levels of neurotransmitters, particularly dopamine, in the brain may be involved. Genetic factors play an important part too although for many children there’s no obvious family history. More boys than girls are affected, for reasons which aren’t clear.

How is it diagnosed?

Usually, by the presence of multiple tics for at least 12 months. A doctor will generally carry out investigations to rule out any other underlying condition that could explain the symptoms. But a diagnosis is usually reached by careful observation and evaluation of the symptoms. There is a rating scale to help identify tic severity.

It is usually helpful to recognise and name the condition as this helps other people understand the problem better, helps a child explain to others that they cannot help the movements and noises and assists in accessing appropriate educational and health support.

Most young people with TS can be helped by their local paediatrician and child psychiatrists/psychologists. A few will need referrals to specialist clinics.

How do tics affect a child?

A tic is basically brief, repetitive, purposeless movement or sound that occurs in bouts. They are involuntary but sometimes they can be suppressed or triggered.

Motor tics produce movement, and vocal or phonic tics produce sound. Tics can either be simple involving one muscle or one sound or they can be complex, involving a coordinated movement of a number of muscles or an utterance of a meaningful phrase.

Simple motor tics, for example, might include eye blinking, head jerks, facial grimacing, nose twitching, shoulder shrugs, spitting. Simple vocal or phonic tics can involve grunting, squeaking, coughing, whistling, humming.

Complex motor tics might mean a child pulls at clothes, touches people or objects, twirls around, or behaves in a way that means they injure themselves. Complex vocal tics might mean making animal-like sounds, unusual changes in pitch or volumes, or swearing.

A tic may appear suddenly and last for a few weeks at a time, then a different tic can emerge a few weeks or months later. The location of the tic in the body can vary and so can the frequency and severity. This variability can lead parents and teachers to conclude that the tics can be controlled. In fact while a child can learn how to suppress some tics, this needs to be followed by bouts of tics later in the day.

Most children have a combination of vocal and motor tics, which are often noticed when a child is between five and nine years old.

What sort of difficulties can these symptoms lead to?

Making sudden noises or movements is very embarrassing, especially in the classroom or social situations. Swearing causes even more trouble. Boys can often get into fights because their swearing is misinterpreted.

A key problem is that children and young people affected by TS can become very isolated. They often feel upset about their condition and wish that people were more understanding.

Bullying can be a problem for any child. Children and young people with TS may seem to be more of a target because they stand out. Their tics, obsessions, compulsions or hyperactivity might single them out from their peers. If bullying is not dealt with, it can lead to schooling problems, low self-esteem or even school avoidance.

Children with TS are just like other children in terms of their interests and skills. They can be sensitive and perceptive, keen on drama and art, or they can be more extrovert and sporty.

What aspects of behaviour are outside a child’s control - and what isn’t?

Parents and teachers are often keen to know what behaviour a child has control over. The children themselves usually know what is caused by TS and what isn’t.

In general, tics are best ignored by everyone. Naughty behaviour needs clear and kind boundaries as in all children, remembering that a child with TS might find it harder to be in control. But this means that they need even clearer advice and structure to help them behave well.

Is treatment available?

Most children with tics do not need treatment for them. The tics will come and go, and usually disappear by adulthood. The most important thing is having good information about tics and understanding what they are, and being able to explain them to other people if necessary.

There are simple things children can try out themselves that might alleviate tics. They may notice that being active, or relaxing, reduces the frequency of tics (this is different for different children). While tics themselves do not usually need treatment, the problems that often go with TS can need treatment.

There are effective treatments for ADHD and Obsessive Compulsive Disorder (OCD) as well as for depression and anxiety. These emotional and behavioural problems should be identified and treated as this can make a real difference to a child’s life.

Some children's tics are helped with medication, but this is usually only suggested if the tics are really upsetting or are getting in the way. Medication can have side effects such as drowsiness or weight gain.

What’s the outlook?

There is often a considerable improvement in symptoms after the teenage years. Some people even grow out of it.

For more information

Great Ormond Street Hospital produces a TS information pack for young people and families. It’s available at: www.ich.ucl.ac.uk/factsheets/children/C070025/

You could also contact the Tourette Syndrome Association (UK): PO Box 26149, Dunfermline KY12 7YU. Helpline: 0845 458 1252. Email: enquiries@tsa.org.uk. Website: www.tsa.org.uk

In summary

TS is a complex condition with symptoms that can make life difficult for children and young people, and their families. For many, it improves as they reach adulthood.

Original Source - The Times Online

Authors - Dr Jane Collins - Great Ormond Street Children's Hospital, London

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