MUM’S PLEA FOR TOURETTE’S HELP
AMUM said she has been “left begging for help” after her daughter suddenly developed Tourette’s syndrome apparently out of the blue last summer.
Helen Reeves-Graham said she noticed her 12 year-old started having nervous tics in her neck last August.
That soon developed into tics in her legs so strong they sometimes buckle under her. She has also started hitting her head and chest and shouting out.
The girl – whom Helen doesn’t wish to name publicly due to the stigma surrounding the condition – sometimes bangs her head hundreds of times a day.
The symptoms have been so bad at times that her mother thought they were seizures.
Terrified about the consequences and unable to get help in the pandemic, she sent videos to her doctor.
“I noticed she started shrugging her neck last August. Within a few days she started full on swearing, doing rude hand gestures, shouting and repeating words,” careworker Helen said.
“The tics started in her legs and became so bad her legs went out from under her.
“It’s been hard to get help in the pandemic because people are not seeing people face to face.
“I sent videos because I was concerned she was having seizures. The tics can last half an hour.
“She punches walls and I have to put a pillow between her and the wall so she doesn’t harm herself. It’s horrible.”
When a paediatrician saw the videos the child was brought in for blood tests to check if she had any infections causing seizures. She didn’t.
Apart from that Helen said they have been left virtually without help. She has had to give up her job as a teaching assistant to work nights as a carer so she can be with her daughter in the day while her husband is with her at night.
There are no specialist support services where they live in Pembrokeshire and doctors won’t give a diagnosis of Tourette’s until symptoms have gone on for a year.
Seven months on, Helen said she is convinced her daughter has classic Tourette’s after researching it on the internet and talking to others affected.
Doctors have given the child ADHD medication, but she does not have an ADHD diagnosis and no Tourette’s syndrome diagnosis can be made until next August at the earliest, the family has been told.
Helen said when she looked for local support groups there were none.
Desperate to make contact with others, she set up her own on Facebook “Tourettes and Tics” support group two weeks ago. The group now has nearly 50 members from around Wales.
Helen said the stigma and lack of understanding about Tourette’s adds to the problem and she also wants to raise awareness.
“People don’t want to talk about it. It is a neurological condition. I think there are a lot of people out there not getting help for this.
“My daughter feels terrible inside. She can’t stop it. She says it feels like it tightens and tightens and then comes out.
“I had to beg for my daughter to be seen. She was hitting her head hundreds of times a day with her fist or whatever was to hand. I begged for help and finally they offered her medication for ADHD in the last couple of weeks. But she doesn’t have a diagnosis for ADHD.”
Cold weather, television and being in the car can make her daughter’s symptoms worse, while listening to music, drawing or sewing seems to ease them.
“At first I was worried giving her a needle thinking she’d stab herself, but she doesn’t.
“She has tics every couple of minutes and towards the end of the day and at night it gets worse. She’ll hit her head and chest and punch and kick.”
Until the tics started the 12-yearold had been at mainstream school where she was happy, had friends and was doing well, although she has had selective mutism since the end of primary and only talks to certain people outside home.
“She wants to be normal. She is so brave. She feels dreadful in herself. She’s always done all right at school. She wasn’t very academic, but middling. Now if she writes she starts to scribble or throw the pen.”
The 12-year-old went back to school when they re-opened after the first lockdown in September, but had to leave after a few weeks because her tics were so strong it became dangerous for her. Despite having a teaching assistant with her and other children being kind and understanding her tics sometimes led her to falling off her chair or her legs giving way.
“She has got a couple of friends and they have been brilliant. Until last summer everything was fine.
“I set up the group for support and because I think people should know Tourette’s syndrome isn’t just about shouting and swearing.”
The NHS website said: “Tourette’s syndrome is a condition that causes a person to make involuntary sounds and movements called tics. It usually starts during childhood, but the tics and other symptoms usually improve after several years and sometimes go away completely.”
Helen’s Facebook support group Tourettes and Tic Support Wales can be found here: https://www. f a c e b o o k . c o m/ g r o u p s / 3 5 7 7 293345694056