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Within hours, a family’s life was changed forever when they received a call from school telling them that their daughter had collapsed.
Now they are hoping that someone will listen to their cry for help.
Just 10 weeks ago Emma White, 46 years old Cheltenham got a call from school asking her to go there as soon as possible after her daughter collapsed.
The 13-year-old’s physical breakdown was the result of an extreme tic attack linked to Tourette’s syndrome.
Ms White wants the voices of those suffering from Tourette’s syndrome to be heard, as she says little is being done to support these children with the disease.
She also believes that if her daughter’s anxiety had been treated earlier, the disease would not have progressed so quickly.
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“The problem with Tourette is that it’s a neurological disorder triggered by anxiety and panic attacks,” she said.
“My daughter was 12 when the anxiety started. With the pandemic, she hadn’t made it through a full school year and, like many, couldn’t settle into this great transition from elementary to high school.
“We could see the anxiety she was panicking and stressing with, making her hot and embarrassed and dizzy.
“When she went back to school after the closings she had tears in her eyes, and I think it was on her mind because of the number of people at school and all the noise.
“I think the young people didn’t know how to deal with what happened.”
The school reported to mom and said she noticed the girl had minor twitching and twitching in her head. However, the tics either went unnoticed or seemed to occur at home.
What is Tourette?
The NHS website states: “Tics are the main symptom of Gilles de la Tourette syndrome. They usually appear in childhood between two and 14 years old (around six years old is the average).
People with Gilles de la Tourette syndrome have a combination of physical and vocal tics.
Examples of physical tics are:
Blinking, rolling, grimacing, shrugging, shaking head or limbs, jumping, spinning, touching objects and other people.
Examples of vocal tics are:
Growling, clear throat, hiss, cough, click tongue, animal sounds, say random words and phrases, repeat a sound, word or phrase and swear.
“She was gone that day”
The first time Mrs White saw her daughter have a serious tic attack was when she got a call from school telling her that her daughter had collapsed.
Ms White said: “My daughter had not collapsed but had had a severe tic attack. I took her straight to the accident and emergency department.
“The girl I took to the hospital was not my daughter, she left that day. She was screaming and saying things she wouldn’t normally do. His legs gave way. It was horrible for her.
“We were in the waiting room to be seen and after hours we were sent home with an A5 sheet of paper explaining what Tourette is.
“Our GP was unable to help and we are just waiting to be seen by the children’s mental health service.”
Ms White feels disappointed with the NHS. They have four months to wait for an appointment with the Child and Adolescent Mental Health Service (CAMHS).
She said, “As a family we face this situation, but it is very difficult some days. When she has the tic and says things, you know it’s not her. It’s like another person living in my daughter.
“We call tic Steve and I am able to ask him if it’s her or Steve answering me.
“The dinner table is very frustrating. Food can be thrown away and I have to sit and feed her because she was able to get the food from the fork to her mouth.
“The poor girl has a cup with a lid because she is losing control and has thrown drinks.
“It was very serious for about six weeks. She is sometimes aggressive but only towards me and not her brother.
“I’m really worried about her. I have seen children end up in wheelchairs due to the tics and break their legs as a result, so I may also have to help them wash.
Ms. White made major changes to provide for her child at a financial cost to the family.
She said: “I had my own childcare business which I had to stop due to the situation and it was not safe to have any other children here.
“I have now taken a 9:00 am to 3:30 pm job at a school, which allows me to focus more on my daughter. This means that we have lost considerable income. So, in turn, this means that we cannot go private for the treatment of the disease.
“I just think if the anxiety had been treated properly when we first sought help for the anxiety, it wouldn’t have happened to this point, but no one seems to know what to do about the syndrome. “
A petition has been launched so that more can be done to help people with Gilles de la Tourette syndrome. For the petition to be heard in parliament, 100,000 signatures are needed. To support the because click here.
There has been a delay in the treatment of the disease due to the impact of the pandemic on CAMHS.
In a joint statement, NHS Gloucestershire Clinical Commissioning Group and Gloucestershire Health and Care NHS Foundation Trust, said: “The Child and Adolescent Mental Health Service (CAMHS) provided by the Gloucestershire Health and Care NHS Foundation Trust provides treatment and support for neurodiversity issues such as ASD, ADHD and other disorders such as that of Tourette.
“Unfortunately, like other parts of the NHS, the pandemic has put a lot of pressure on CAMHS, but the team continues to work hard to see patients as quickly as possible and to provide ongoing support to patients and families.
“This includes escalating appointments if necessary and if symptoms worsen while a youngster is waiting to be seen. We are sorry to learn of the family’s experience and urge them to contact our PALS department so that we can further examine their individual concerns. “
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