A mum has described the pain of watching her daughter suffer injuries as a result of Tourette’s sydrome.
The condition was spotted by a teacher when Lara Blakemore was five, but mum Kate, from Risca near Newport, said it took years to get a diagnosis.
Lara, 11, has had her confidence and self-esteem rocked by Tourette’s, Wales Online reports.
In recent times the deeply misunderstood condition has left her withdrawn from school life and a potential danger to herself through her involuntary physical tics.
“Over the past few months she has been banging her head on doors and on her bed,” Lara’s mother Kate Blakemore said.
“She’s ended up with bruises on her forehead and she’s been developing headaches as a result.
“She also had a tic last year where she was elbowing herself, which occurred so often that she developed marks on her side and hip. As her mum it was really difficult to witness.”
Kate said the first person to pick up on Lara’s unusual tics was her primary school teacher at the age of five.
“She noticed she was coughing and blinking a lot in class, and also doing little grunts and vocal things,” Kate said.
“We first went to the doctor about it when she was six. To be diagnosed with Tourette’s you have to have both vocal and motor tics – and she did. But years went by and we didn’t hear anything.”
In 2017, Kate said Lara’s tics got so severe that they decided to go back to their GP who vowed to “chase it up”.
“But it ended up being a ‘chapter of accidents’. Every referral letter seemed to get lost by someone along the way, and it wasn’t until 2019 – at the age of nine – that she finally got a firm diagnosis,” Kate added.
Tourette’s syndrome is described as an inherited neurological condition that affects around one in every 100 school-aged children.
It is often misunderstood as a condition which makes people swear or say socially-inappropriate things. Although it is true that coprolalia – the clinical term for involuntary swearing – is a symptom of Tourette’s, it only affects around 10% of patients.
Once Lara was officially diagnosed by a general paediatrician, the most frustrating thing for the family was trying to access specialist help.
“Our GP said he didn’t really know much about it and advised that the best thing we could do was talk to other parents,” Kate said.
“He said there was no specialist to really refer her to. I appreciate it wasn’t the GP’s fault, but it was frustrating to find out there were no experts in the area to be able to see her.
“My sister-in-law works in a children’s hospital in London and I know they’ve got more than one specialist there. Places like Birmingham and London seem to have specialists but there didn’t seem to be anyone in Wales to refer her to.”
Kate said Lara has become an expert at “masking” her tics from her classmates at Ty Sign Primary School, Risca, over the years.
“But because she tries to suppress them in class, when she gets home she just cannot stop ticking,” Kate added.
“In school, because she’s so concentrated on trying to control her tics it takes her longer to do her work. She’s very bright ability-wise, but she realises her Tourette’s is affecting her progress.
“She worries about things like tests and exams in the future and about concentrating so much on not ticking that she won’t have the time to write down all her answers.
“But her teacher has been great. He lets her sit at the back of the class so if she does tic the others can’t see her.”
Unfortunately, Lara’s Tourette’s has also had an impact on her general well being and has stopped her from doing the things she loves most.
“Sometimes it keeps her up all night. We’ve had nights where she’s awake until 5am because she can’t stop or calm down and that has a knock-on effect for school the next day,” said Kate.
“Before lockdown she got to the point where she was refusing to go to school. The thought of it was stressing her out so much. It was so hard.
“She’s an amazing performer and a very talented singer, plus she acts and dances. But she’s lost so much of her confidence over the last year or so.
“She’s performed solos in front of hundreds of people before, but all of a sudden she’s really anxious about things like that. She doesn’t want the cameras on for her dance classes.”
Unlike many people with Tourette’s who are triggered by anxiety, Kate said Lara was often at her worst when she was relaxed and around her close network of family and friends.
“When she’s sitting down watching a film she’s ticking all over the place. In the cinema, she’s so absorbed in the film she kind of lets herself go and doesn’t realise she’s doing her tics.
“But stress and anxiety can affect them as well, so when she’s upset or wound up her tics can be really bad too.”
Until now Lara has received no medication for her Tourette’s and only had a handful of online therapy sessions with child and adolescent mental health services (CAMHS) last year during lockdown.
Kate, who had to leave her job as a teacher due to a persistent bad back, added: “They said she’d developed a few coping techniques and then discharged her [from CAMHS]. But when her head banging developed we reached out to them again, and they said we had to go through the whole process of referring her once more.
“Knowing how long that took last time, we just decided to pay for her to see someone privately because it’s causing her so much anxiety. But at £40 per counselling session it’s not exactly cheap.”
Kate said some Tourette’s support groups on social media have helped them find families going through similar experiences.
“Some children’s tics apparently calm down into their teens and into early adulthood while others don’t. I take heart from the fact that lots of people with Tourette’s go on to have very normal jobs and are able to do regular things like driving,” Kate added.
“She really wants to be a performer and she’s worried Tourette’s will hold her back. But you just have to look at singers like Billie Eilish who has the condition. In fact, one of the Eurovision performers this year has Tourette’s. So we try and show her the positive role models out there.
“She just needs to come to terms with who she is and not shy away from it. I feel she’s kind of turning a corner and she’s seeming happier going to school – and some of that is down to the private counselling we’ve arranged for her.”
Both Kate and Lara are now determined to reduce the stigma around the condition by increasing public awareness of it. There is also a petition calling for increased funding for the development and research of Tourette’s which can be found here.
The petition reads: “Tourette’s affects one in 100 children, yet the support provided is minimal and very patchy across the UK. Some areas have no support.
“There’s only a handful of specialist Tourette’s centres in the whole of the UK – we need more of these to provide care for everyone. More research leads to more help.
“The support throughout the UK is nothing far from shocking. Not getting a diagnosis or the correct support at such an important age can lead to lifelong behavioural and mental health issues which can be alleviated by having the right support from the start.
“If more funding was given to create more specialist Tourette’s centres this would help many families who are currently struggling. More research would ultimately give more answers.”
In response to Kate’s claims about accessing support, a spokesman for Aneurin Bevan University Health Board said: “Assessments and treatments for Tourette’s in young people are provided by a range of specialist services within our health board, such as our primary care mental health support service (PCMHSS), and those with more complex needs are treated by our specialist child and adolescent mental health service (SCAHMS).
“During the Covid-19 pandemic the CAMH service established additional telephone/virtual appointments to provide patients and their families with further support.
“We are disappointed to hear that Mrs Blakemore feels that her daughter’s needs were not fully met by our services, and would urge her to contact us directly to discuss her daughter’s treatment.”