Friday 20 April 2007

Womens Weekly Article on Tourette Syndrome

ok if you ave not read the article on Tourette Syndrome yet check it out here in the media blog

Now this is my personal blog and I will give my personal opinion here....... First of all 99% of people with TS are not males.

I feel saddened to read this, this girl does not just have TS, as you all know I am no expert but I have a son with TS Plus, and a daughter with suspected TS and I have spent many many many hours researching, reading and talking to people with TS, so I feel I have a right to comment. Please set me straight if I am wrong.

Now I have never known a person with just TS to scream for 6 hours because the Crocodile man has died and she can not meet him, I have never ever known a person with just TS to scream for 3 hours with 1 teaspoon if ice-cream. I have never known someone with just TS to scream for hours on no end for no reason, I have never known anyone with just TS getting paranoid and having illusions etc...... Now yes I have heard of people with TS and other disorders have the above.

I have emailed the Women's Weekly and sent then some facts, I would also like to know where there accountability is when it comes to this.

My god if my child was just diagnosed with TS and I read this and thought that this is what TS I would be freaking out...... this is so out of context. Don't get me wrong I am not saying she does not have TS but she also has other issues. She either needs another doctor, or the mum needs to do some research herself. In the article she mentions there is minimal information out there about TS, yes for New Zealand there is, but there are some amazing wonderful international sites which have so much information in them. So please if you are reading this with a newly diagnosed child with TS don't panic this is so inaccurate.

Gees if I blamed all Chris's ADHD and OCD etc on TS my doctor would be setting me straight quick smart, which brings me onto another worry - who is her doctor telling her this is all TS, or is she getting muddled. My big concern here is that if the doc. is labelling everything under the TS umbrella the this poor girl is going through hell because of a misdiagnosis. The old saying goes "Remember we can only help the child with the correct diagnosis" and in this case TS is not just the only diagnosis she should have. I feel for this child......

I emailed this part as well as some other facts to the Women's Weekly

Do all people with TS have associated behaviors in addition to tics?

No, but many do have one or more additional problems which may include:

Obsessions which consist of repetitive thoughts which can become unwanted or bothersome.

Compulsions and Ritualistic Behaviors which occur when a person feels that something must be done over and over and/or in a certain way. Examples include touching an object with one hand after touching it with the other hand to "even things up" or repeatedly checking to see that the flame on the stove is turned off. Children sometimes beg their parents to repeat a sentence many times until it "sounds right." Repetitive copying and erasing of work in school can be quite disabling.

Attention Deficit Disorder with or without Hyperactivity
(ADD or ADHD) occurs in many people with TS. Children may show signs of hyperactivity before TS symptoms appear. Indications of ADHD may include: difficulty with concentration; failing to finish what is started; not listening; being easily distracted; often acting before thinking; shifting constantly from one activity to another; needing a great deal of supervision; and general fidgeting. Adults too may exhibit signs of ADHD such as overly impulsive behavior and concentration difficulties and the need to move constantly. ADD without hyperactivity includes all of the above symptoms except for the high level of activity. As children with ADHD mature, the need to move is more likely to be expressed by restless, fidgety behavior. Difficulties with concentration and poor impulse control may persist.

Learning Disabilities may include reading and writing difficulties, problems with mathematics, and perceptual problems.

Difficulties with impulse control
which may result, in rare instances, in overly aggressive behaviors or socially inappropriate acts. Also, defiant and angry behaviors can occur.

Sleep Disorders are fairly common among people with TS. These include difficulty getting to sleep, frequent awakenings or walking or talking in one's sleep."

The above information is from the TSA website.

I have emailed the article to many people who have dealt with TS for years and they all feel like me there is a hell of a lot more going on here than just TS. I will leave it here but would love to have your comments please......

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