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Thread: The Truth About Tourette: A Report from Australia

  1. #1
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    Post The Truth About Tourette: A Report from Australia

    GOOD LIFE: The truth about Tourettes
    Illawarra Mercury, Australia
    LISA WACHSMUTH
    08 May, 2012


    Fourteen-year-old Cassidy Richardson has learned to live with Tourette syndrome - it’s the misconceptions she and her family can live without.
    ‘‘I’ve never heard her swearing’’ and ‘‘But she’s always so well behaved!’’ are a couple of the familiar comments made to her mother Janelye when hearing about the Kiama teen’s condition.

    Coprolalia (the involuntary utterance of inappropriate or obscene words) is just one of the symptoms of Tourette syndrome (TS) - and only a small percentage suffer from it - but it’s the one thing many people associate with the neurological disorder.

    That’s not surprising considering the only point of reference many have is films like Deuce Bigalow: Male Gigolo where one character with Tourettes uncontrollably screams out profanities.

    However the reality is that the variety and complexity of tics or tic-like symptoms that can be seen in TS is enormous. In Cassidy’s case they became obvious in 2005, although it took four years to get a diagnosis.

    ‘‘We first noticed the symptoms when Cassidy was in Year 3, although the motor tics which included head shaking, flicking and nose twitching had probably started when she was in Year 2. Then in Years 4 and 5 the vocal tics - sniffs and grunts and throat clearing - began,’’ Janelye says.

    ‘‘She’d also been diagnosed with acute rhinitis so we initially put the throat clearing and sniffing down to that. It was hard to differentiate between the allergy and what we now know are vocal tics.’’

    It was Cassidy who diagnosed herself after seeing some Tourette syndrome awareness advertisements on television. Her self-diagnosis was confirmed by a specialist and she’s also been diagnosed with Obsessive Compulsive Disorder, which is one of the co-morbid conditions that can go along with TS.

    A proper diagnosis has enabled Cassidy, her parents and three siblings to better cope with its effect on all their lives.

    ‘‘Cassidy has some fantastic friends who support her, and her school gives her wonderful support, but she has experienced bullying because of her tics and we’ve had to keep her home from school for days at a time when her vocal tics get really bad,’’ Janelye says.

    ‘‘The symptoms wax and wane, so no two days are ever the same. And while she can hold onto them - if she’s in class for instance - they do build up and need to be released at some stage. When she was younger she used to hold onto them all day and when she’d come home she’d nearly shake her head off her shoulders the tics were so violent.

    ‘‘Now she has a time-out card which she can show to her teacher so she can leave the classroom with no questions asked.’’

    Medication is sometimes prescribed for those with severe tics, but for milder tics self-management is advised, says Janelye.

    ‘‘When I’m tired, stressed or nervous they get worse, so sleep and relaxation can help,’’ says Cassidy.

    The biggest help, though, has been dance. ‘‘Cassidy has always got to be doing something, she’s always got to be moving, and now she focuses a lot of that energy into dance - she does up to 16 classes a week,’’ Janelye says.

    Raising awareness of the condition, which affects 1 per cent of the population, is the goal of Tourette Syndrome Awareness Week this week and includes a Sydney (Australia) conference on Saturday.

    The week is run by Tourette Syndrome Association of Australia (TSAA), which gives support and information to families who are dealing with the condition.

    Marea and Andrew Whitley of Port Kembla say awareness is better today than it was when their twin sons Jordan and Jarrod, now 27, were young. The boys were diagnosed with Tourettes at age 12, but the symptoms had been apparent since they were in Year 2.

    ‘‘They had attention problems and were first diagnosed with ADD - a co-morbid symptom with TS,’’ Marea says. ‘‘We dismissed the ticcing, as it was something I had as a child. I now know I have TS too, although it’s never been diagnosed.

    ‘‘But the ticcing got worse as the boys got into their teenage years and they were eventually diagnosed, which made things a lot clearer and we had a better understanding of what we were dealing with.’’

    Jordan did not want medication and struggled through school with the help of a scribe as his tics made it hard for him to write. Jarrod took medication which helped ease the symptoms somewhat, but in Year 11 he stopped taking it as he didn’t ‘‘feel like himself’’ on it.

    ‘‘Jordan, who has also been diagnosed with Asperger’s syndrome, still struggles, but his body tics have eased and his vocal tics have become more sophisticated with age,’’ Marea says. ‘‘Jarrod has a good job, is married with two kids, and is doing well. A lot of the external symptoms disappear or ease, with maturity, like mine did.’’

    Cambewarra family Matt and Julianne Dallas have also got two children - Macauley, 12 and Anabelle, 8 - with Tourettes.

    Matt, vice-president of TSAA, says the couple had no idea what was going on when Macauley’s symptoms appeared.

    ‘‘Macauley first developed tics when he was about three - they are constantly evolving and have included motor tics such as jumping, rolling eyes and blinking, and vocal tics such as sniffing and throat noises,’’ he says. ‘‘He wasn’t diagnosed till he was about six or seven. Before that we were doing the worst thing possible - telling him to stop - which just put more pressure on him.’’

    When Anabelle started ticcing at five, the couple knew what to look for but it’s still not easy. ‘‘Anabelle’s tics can put her at risk of hurting herself,’’ Julianne says. ‘‘She can’t sit still and she throws handstands a lot, even at Coles when we are grocery shopping, and she holds her breath. She has a lot of vocal tics - squeaks and whistles - and she often repeats words she hears when out in public.’’

    The children are home schooled, after bullying caused Macauley to be pulled out of school in Year 3. And they throw their energies into extra-curricula activities - dance for Anabelle and guitar for Macauley.

    ‘‘That repetition that they need, and that can cause problems for them, can actually help them in some areas - as they put all their focus into their chosen activities,’’ Julianne says.

    The couple use diversion tactics, relaxation techniques - and a lot of love - to help their children deal with Tourettes and are looking into cognitive behaviour therapy. ‘‘The children’s symptoms come and go and the severity changes,’’ Julianne says. ‘‘We try different things to help them, such as distraction or simply a hug, and such things work some days, but not others.’’

  2. #2
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    Default Re: The Truth About Tourette: A Report from Australia

    I appreciate this post because I am always blaming myself for my sons TS. I will think that it's because I took phenergan when I was pregnant, or got him the H1N1 vaccine or just let him go to public school. When I read this article for a brief moment I let myself think this was truly genetic.

  3. #3
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    Default Re: The Truth About Tourette: A Report from Australia

    I will think that it's because I took phenergan when I was pregnant, or got him the H1N1 vaccine or just let him go to public school
    There is no evidence that either of these is the cause of Tourette, especially the latter.

    Sorry to hear about your feelings of guilt, which is not uncommon among parents at times, but understanding that Tourette is a genetic disorder, over which you have no control, allows you to focus on providing your child and yourself, the tools required to deal with Tourette.

    What's most important is that your son does not pick up those signals of guilt from Mom and Dad, and that his self esteem and self confidence are reinforced, knowing that his Tourette should not be an impediment to anything he hopes to do in life.

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