‘Parents in tears’ looking for help with Tourette’s syndrome

‘Parents in tears’ looking for help with Tourette’s syndrome

Tracey Coughlan from Ballymacoda said her son, who is now in his late teens, had to be admitted to the emergency department for what appeared to be seizures.

A BRAVE Cork mum, whose son’s seizures turned out to be a violent form of Tourette’s, voiced concern that children like him are being left a year to be assessed for the condition.

Tracey Coughlan from Ballymacoda said her son, who is now in his late teens, had to be admitted to an emergency department for what appeared to be seizures. She explained that while medical professionals ruled out epilepsy, they failed to pinpoint the cause. It was only when a friend of Tracey’s suggested that the involuntary movements might be tic fits that Tracy realised the extent of her son’s Tourette’s.

Now, an administrator on the Tourette Alliance Ireland Facebook page, Tracey said she can see that the issue isn’t going away. She is currently volunteering with the organisation to promote acceptance, advocacy and awareness about Tourette’s syndrome, tic disorders and their associated conditions. She is calling on the HSE to acknowledge Tourette’s syndrome and improve the treatment of families dealing with the condition ahead of Tourette Awareness Month which starts this Saturday and runs until June 15.

Currently, there is no consultant specialising in the area in Ireland. The Cork mum opened up about messages they are receiving from parents of children living with Tourette’s who can see little hope on the horizon. She said that parents have been contacting her in tears and are unsure where to turn.

“A child has to be living with vocal and motor Tourette’s for a year before being assessed for the condition,” she explained.

“Unless they have an accompanying condition with the Tourette’s they are not technically entitled to any support or extra resources in school.”

She emphasised that little has changed since her own, now 19-year-old son’s, Tourette’s flared significantly during puberty.

“Puberty makes it so much worse,” she said.

“Every time there was a growth spurt his body would go bananas. He experienced tic fits which appear like seizures. The difference is that the person suffering from them is totally conscious and aware of what is going on around them. The first time it happened we rang an ambulance and the doctor admitted him for observations.”

She said that the other tics he experienced were equally as frightening.

“It was scary to watch and would get quite violent. He would hit himself in the head. It got to a point where he was wrapping the pillow around his head and holding it tight to stop the involuntary movements. He is 6ft 8 so suffered from extreme tics in his legs due to growth spurts. Sometimes his legs would unexpectedly go from under him as he was walking down the street and that can be very scary for a child. One of the scariest tics was the breathing one. He used to reach a level where he was about to pass out before his body forced him to breathe out of desperation.”

Ms Coughlan described her shock at the lack of awareness around the condition.

“Anytime he got the tic fits we would have to take him to hospital for observation just to be sure. One time we had been waiting a few hours before we got to finally see the doctor. My son nodded his head like you do to salute someone. The doctor nodded back but when he kept nodding he asked what was wrong. When I explained that he had Tourette’s the doctor said he had never heard of the condition. I was speechless when he asked me what it was. However, even though I was shocked I had to let it go.”

She spoke of the challenges her son faced socially as a result of Tourette’s syndrome.

“One of the tics happened to be in his middle finger. On one occasion another boy thought that the middle finger was for him. My son ended up getting a black eye as a result and was taken to A&E with a suspected fractured cheekbone. The boy didn’t realise he had Tourette’s and learned not to be so quick with his fists. This was a misunderstanding and there are no bad feelings but did highlight the dangers for us of what challenges a child can be faced with socially as a result of Tourette’s.”

Tracey added that many of the parents reaching out through the Tourettes Ireland Facebook page said they were meant to feel like the diagnosis was their fault.

“Many parents are told that the tics must be down to trauma and are sent to on parenting courses. This is extremely hurtful for a mum or dad. A lot of the time tics run in families but many are made to feel like it is down to bad parenting which is not the case.”

To find out more about Tourette’s Ireland or to access support readers can visit their Facebook page

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