Growing pains of being an 11-year-old with Tourette’s
Lara Blakemore and her family said they have found it incredibly tough trying to find specialist support for the misunderstood condition. Health correspondent Mark Smith reports
LARA BLAKEMORE is described by her mother as a bright, intelligent young woman who is destined for a career in the performing arts.
But unlike most children her age, the 11-year-old has a debilitating condition which has rocked her confidence and selfesteem – Tourette’s syndrome.
Recently the deeply misunderstood condition has left her withdrawn from school life and a potential danger to herself through her involuntary physical tics.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, from Risca near Newport, said the first person to pick up on Lara’s unusual tics was her primary school teacher, when she was aged 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 schoolaged 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 tic-ing,” 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 tic-ing 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 wellbeing and has stopped her 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.
“She’s an amazing performer and a very talented singer, plus she acts and dances. But she’s lost so much of her confidence.
“She’s performed solos in front of hundreds of people before, but all of a sudden she’s really anxious about things like that.”
Unlike many people with Tourette’s who are triggered by anxiety, Kate said Lara was often at her worst when she was relaxed.
“When she’s sitting down watching a film she’s tic-ing 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.”
Until now Lara has received no medication for her Tourette’s and has only had a handful of online therapy sessions with child and adolescent mental health services ( CAMHS) last year during lockdown.
Kate 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.”
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,” 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.”
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 at petition. parliament. uk/ petitions/575370