Tourette syndrome

The Tourette Syndrome (UK) Association was set up to support people with Tourette Syndrome (TS) and their families. TS usually starts in childhood, and consists of tics, involuntary movements or noises. Put like that, it doesn't sound too troublesome, but as the following stories show, TS can have a devastating impact on a child's self esteem and ability to benefit from education. The following stories have been told to us by our members. They - and their children - have given us their permission to tell you to help you understand how much TS children and families need help. We start with how hard it is to get a diagnosis and proper treatment.

 There aren't many rules in dealing with TS, but number one has to be not to punish children for what they cannot help doing. Yet that is exactly what Louise Slater's GP told her to do when she first took her son Jack to see her. Then aged 9, Jack had a vocal tic which was occurring several times a minute. The GP described Jack's tic as a nasty little habit and recommended a stern telling off each time he did it. This approach simply made Jack worse, so Louise took him to see a different GP at the same practice. He was adamant that the problem would be solved if Jack played football (it had worked for a member of his own family, he said) and dismissed the family's own suggestions that Jack might have TS. Out of the blue, the first GP then rang and asked further questions about Jack's tics and finally arranged for him to see a neurologist who diagnosed him as having TS.

Up to one in every hundred children is now thought to have a diagnosable form of TS. In many cases, the TS will be mild and cause no problems. More severe TS is another matter, and needs informed and professional support from teachers and others if a child is to realise his or her full potential.

 Joe is just finishing Year 6 at school. Not for the first time, he refused to go to Sports Day as he does not want to draw attention to himself. It would be a good idea if Joe refused to go more often as then he might be awarded a Statement of Educational Need. As it is, despite a powerful letter in support from his paediatrician, Joe has been turned down.

 Joe has always had problems in our education system - even at playgroup he found himself on the Fidget Carpet. By the time he got to Year 2 at school, he was a very unhappy boy. He still sees life in very negative terms.

 Like many other children, his behaviour has been misinterpreted and he and his family have suffered as a result. Joe held his tics back in class until he could go to a private place to let them out. The most private place was the toilets, and his school took this to mean he had a urine infection. They also wrongly thought Joe's behaviour was due to problems at home, not to his TS.

Joe has had to develop his own coping methods at school, and has done very well. His SATS score was 3, even though he has ADHD and OCD in addition to his TS. But as his mother Alison says, if he had proper help, what might he really achieve?

 Often, problems at school are due to the behaviour of other people, and children with TS often have to deal with bullying in addition to their tics.

 Kyle is now 12 and was diagnosed with TS 3 years ago. His TS includes Attention Deficit Hyperactivity Disorder (ADHD) and Obsessive Compulsive Disorder (OCD), and he also has to cope with dyspraxia and an autistic spectrum disorder. Yet Kyle is so good at maths that he is on his school's gifted and Talented Register. He is also good at cricket and rugby. You would think that his school would be trying to nurture such a talent, but this is far from the case.

 Kyle's approach with his TS has always to be open about it, as his tics can arouse considerable concern on the part of other people. On his first day at secondary school, he took a question and answer session in his class to explain his tics. Most children have responded well, but 4 boys have not and have systematically bullied him. On one occasion he was assaulted and knocked to the floor and had his glasses broken; on another he was indecently assaulted by one boy and kicked in the head by another. The school has not been supportive.

 

Kyle's Mum Zoe visits or rings the school every week for Kyle. She kept him off school 3 times before she realised that the school preferred that to solving the bullying problem. Whether he stays at home or goes to school, Kyle's education is suffering at the hands of others.

 Eloise is unusual in being a girl with TS. Boys are 3-4 times more likely to suffer from TS than girls. Although people often think that swearing always goes with TS, in fact it occurs in only 10-15% of cases. There are some drugs that help TS, but they don't always work. Even when they do work, the side effects may be unacceptable.

 "It was the best of times, the worst of times", so wrote Charles Dickens about the French Revolution. Most parents would regard their daughter's teenage years in much the same way, pleasure at her growing independence being tempered by conflicts over the boundaries of acceptable behaviour. When your daughter has TS, those conflicts are harder to manage.

 Eloise is 13 and likes nothing better than going out with her friends, nice clothes, making herself look good (a navel ring would be cool), chatting on the internet, and helping a neighbour with her horses. She does not like people to know that she has TS, although it has significant effects on her, her family and her education.

 When her tics began, Eloise was just under 5, and her parents took her to their GP because she was blinking her eyes, and making noises. After ruling out epilepsy, he referred her to the local hospital, where she was immediately diagnosed as having TS.

 She has had to change the medication that was prescribed for her, because it had unacceptable side effects. She struggles to control her behaviour, and although she is making progress, her tantrums can be violent and destructive - Mum Lynne recalls how she wrecked her brother's bedroom. She swears a lot, and can be physically abusive not just to her family but also to other children, and occasionally to teachers. Having been excluded from school several times for her behaviour, Eloise has now been statemented, which should help to ensure that she gets the additional support she needs.

 Although Eloise can (mis)behave like any teenager, her TS creates extra problems for her. As she puts it "I've got something in my head that tells me I've got to do it".