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Marked out by Tourette's

Aug 21 2006

By Jane Picken, The Evening Chronicle

 

Nathan Bell, eight, tries hard to control his Tourette's syndrome at school

Little Nathan Bell comes bounding in from a regular day at school, and despite his best efforts the bright eight-year-old cannot keep still.

As he watches the television he twitches uncontrollably and rapidly as mum Joanne watches. He's been suppressing the involuntary movements all day at school, fearful of what his classmates might say.

But in the comfort of his own home Nathan is comfortable with his Tourette's, a condition he was diagnosed with around a year ago, along with attention deficit hyperactivity disorder (ADHD) and obsessive compulsive disorder (OCD). The condition causes him to have involuntary movements known as tics.

"It's heartbreaking sitting watching him when he's having his tics," said mum Joanne, from Consett, who also has 16-year-old daughter Karli.

"His tics are continual and he never has vocal ones where he will swear, but he will grunt or cough to try to cover them up. They come in cycles along with his OCD and usually last a few months.

"It can become really worrying and during one OCD episode he kept wanting to crush drinking glasses, so we had to start giving him plastic cups.

"Nathan is a lovely little boy, and he is so intelligent - he likes doing the crosswords in my magazines - but there's no way of knowing if it will get worse in the future."

Tourette's usually starts in childhood and is likely to persist throughout life, although the degree of severity may differ.

Little is known about the cause of the condition, which is characterised by a combination of chronic muscle tics or twitch-like movements and vocal tics, which usually involve the person swearing without having any control.

In 1825, French neurologist Jean-Marc Itard described the case of a noblewoman called the Marquise de Dampierre. She suffered involuntary tics that involved many parts of her body - and she also demonstrated echolalia (the repetition of a sound, word, or phrase just heard) and coprolalia (the vocalising of socially unacceptable words).

This was the first time this condition had been documented. Some 50 years later, French neurologist Dr George Gilles de la Tourette wrote about the case and several others and consequently it was named Tourette's syndrome (TS).

Now more and more people are being diagnosed, but mum Joanne struggled to convince medics that Nathan needed specialist attention.

His troubles started when, aged just five, he was forced to leave his primary school after teachers complained of his behaviour. At the same time mum Joanne had noticed Nathan blinking regularly and rubbing his chin with his shoulder repeatedly.

"I used to dread picking him up from school because every night when I went to collect him they would say he was being silly," remembered sales assistant Joanne.

"They would say he was messing about and talking too much, so I just decided to change schools and his new one is lovely. They have quite a few children with special needs and seem to understand a lot about Tourette's.

"At school he will suppress the tics but they tend to be worse when he is excited. At home he doesn't get embarrassed about them, so he tics away and we just ignore them.

"In the beginning I knew something was not right and he was eventually diagnosed by a neurologist at Newcastle General Hospital."

Despite his condition Nathan is doing well at school, taking a keen interest in maths and computers, as well as spending endless hours with his encyclopaedia and fact books at home. He also chats to other youngsters with Tourette's through online chat forums, comparing tics and talking about their experiences with the condition.

Thanks to Big Brother winner Pete, awareness about Tourette's is growing among youngsters.

The 24-year-old was often seen swearing, coughing and making other noises to disguise his tics, but he has been candidly open when talking about his condition.

"It's good to see Pete on television because it is raising public awareness about Tourette's," said Joanne, who decided not to put Nathan on any medication to avoid side-effects.

"Nathan is quite grown-up about the whole thing and he's pleased about Pete, especially as a lot of his school friends think he is making Tourette's look quite cool."

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Tic off the cause

Known fully as Gilles de la Tourette's syndrome, TS was named after the doctor who first recognised the symptoms.

TS is known to run in families, although some cases - are not inherited. It usually begins in childhood or the teenage years and is caused by problems with the development of the central nervous system.

Early symptoms include repeated twitches, blinks or jerks which are referred to as `tics'. In some cases, these may progress to more serious symptoms such as complex physical movements, grunts, coughs, noises or words.

A number of medicines can be used if symptoms are more severe. The medicines used will depend on the nature of the tics and how severe they are. It may be necessary to try several medicines before one that suits the person is found.

People with TS may be referred to a variety of different health care professionals for treatment, such as paediatric neurologists and child psychologists.

About half of children diagnosed with TS also have problems with attention and hyperactivity.

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Help at hand

Tourette's Syndrome Association - www.tsa.org.uk or call their helpline on (0845) 458 1252.

Attention Deficit Disorder Information and Support Service - www.addiss.co.uk  or call (0208) 906 9068.

ADHD week

Addiss (Attention Deficit Disorder Information and Support Service) will hold the first national ADHD Awareness Week starting on September 18.

During the week the service will be releasing the results of the most comprehensive survey ever undertaken of families and adults living with the condition.

The service is also calling for more understanding about ADHD and funding to support families and provide resources for children.

Fundraising activities will also take place across the UK.

 

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