Doctors blamed a teenager’s rare neurological condition on ‘watching too much TikTok,’ her mother says.
Helen Huitson’s daughter Jessica’s ordeal began when she started experiencing “strange” body movements and seemed “unable to sit still”.
Jessica, now 15, became sporadically unable to control her body and soon began developing verbal tics, ranging from repeating apologies to abusive language.
She also began to suffer non-epileptic seizures, up to 120 a day.
Despite Jessica being taken to the hospital several times, her mother said she was distressed when doctors attributed the girl’s suffering to “anxiety.”
However, Ms Huitson was further horrified when doctors apparently suggested her daughter was simply watching too much TikTok or was “faking it” by copying symptoms she had seen online.
Helen Huitson, 49, pictured with her daughter Jessica Huitson, 15, who began experiencing “strange” body movements in March 2021 and appeared “unable to sit still”.
After being admitted to the hospital several times with seizures and paralysis, doctors attributed Jessica’s suffering to “anxiety.”
Her experience came after British doctors reported that young women were developing tics as a result of the psychological pressures of Covid lockdown.
Experts theorized that fears about the pandemic and climate change caused susceptible young people to “catch” tics from social media influencers who shared their own symptoms online on social media sites like TikTok.
Although Ms Huitson says doctors initially thought Jessica’s tics, which began in 2021, were due to TikTok, she was later privately diagnosed with paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS).
PANDAS is believed to be an autoimmune disorder and a neuropsychiatric condition promoted by an abnormal immune response to infection.
The charity PANDAS Network explains that the condition most often occurs after a streptococcal infection. It can cause brain inflammation if the body’s immune system mistakenly attacks healthy brain cells, affecting the functioning of the central nervous system.
However, research into PANDAS is limited, meaning some diagnoses are considered controversial and there are no formal medical guidelines for diagnosis in the UK.
She was eventually privately diagnosed with PANDAS: Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.
PANDAS is thought to be an autoimmune disorder and a neuropsychiatric condition caused by an abnormal immune response to an infection.
Ms Huitson said she now wants to raise awareness of PANDAS after feeling “belittled” by the treatment Jessica received at University Hospital of North Durham.
“She went from being completely capable, doing everything for herself, to being unable to do anything for herself, unable to walk, sometimes totally paralyzed, unable to speak,” he said.
“I’d never seen a seizure in my life. They’d start and never stop.
‘They told us ‘it’s mental health, it’s anxiety, there’s nothing we can do, take her home.’
‘Someone at the hospital told us this was because I was letting him watch too much TikTok.
“It was ridiculous. We would go to the hospital and they would belittle us. They wouldn’t believe us and we would have to fight to find out what was really going on.
‘We were told that he was possibly faking it or that it was because his mental health was poor.
“It was absolutely horrible. You saw our son in such bad shape and you didn’t get the support you needed and you didn’t know who to turn to.
‘She was a normal 12-year-old girl, and sometimes she felt a little distressed, but she was not an anxious child.
They probably thought, “He’s 12, he’s approaching puberty, it was the beginning of Covid,” that was an easy label to put on him.
“I knew it wasn’t true and I was willing to fight to the grave to prove it.”
Ms Huitson believes her daughter developed PANDAS after contracting tonsillitis in October 2020, five months before symptoms began.
Symptoms of PANDAS include anxiety, tics, depression, sudden deterioration in school performance, motor or sensory abnormalities, as well as insomnia, according to another charity, PAN PANDAS UK.
Ms Huitson says that four weeks after Jessica’s first tic, the frequency of her tics increased dramatically and that at the same time the seizures also began.
She said: ‘His arms started moving strangely, his legs too. He was making strange movements with his neck. He had never been like that before.
‘I was like, “Jessica, what are you doing? Why can’t you just stay still?”
She said, “Mom, I can’t help it.”
‘She had no control over anything in her body. One moment she was leaping like a tiger and the next she was stuck on the ground in a crouch.
‘The things coming out of his mouth were horrendous and she had no power to stop them.
‘Sometimes it was something really cute and funny like, “I’m sorry, I’m sorry, I’m sorry about that.”
‘Other times it was the most horrible sentence where she would scream “he’s kidnapping me” while I was pushing her down the street in a wheelchair.
‘She went from being a normal 12-year-old girl who could do what she wanted, go out with friends and have a normal school life to being a girl who can’t be alone, who can’t go to school.’
Ms Huitson believes her daughter developed PANDAS after contracting tonsillitis in October 2020, five months before symptoms began.
Symptoms of PANDAS include anxiety, tics, depression, sudden deterioration in school performance, motor or sensory abnormalities, as well as insomnia, according to the PAN PANDAS UK website.
After being privately diagnosed with PANDAS, Jessica was admitted to the NHS paediatric department in Darlington, however Ms Huitson claims they are limited in how they can treat the condition.
After receiving advice from a private immunologist and neurologist, Ms Huitson is now… fundraising to receive Jessica’s IVIg treatment, a therapy that uses immunoglobulins to increase antibody levels in the blood, to help prevent her immune system from attacking healthy cells.
‘(Jessica) is a very determined and strong-willed girl, but she suffers terribly.
‘The immunologist has now said that she can be proposed for receiving IVIg.
“She won’t get better unless we try intravenous immunoglobulin. It might put her into remission, but maybe not. It’s our last hope.
After receiving advice from a private immunologist and neurologist, Ms Huitson is now fundraising to get Jessica IVIg treatment as a “last hope” – a therapy that uses immunoglobulins to help fight infection.
“We don’t know how he’ll react to the treatment. There’s a fear of not knowing how his body will react to the intravenous immunoglobulin. It’s a really scary time.”
“We hope this will give him the remission he needs, but we don’t even know how many treatments he will need.”
The charity PANS PANDAS UK says: “PANDAS is a neuropsychiatric illness. This means it is a medical condition with both neurological (e.g. difficulties with thinking or movement) and psychiatric (i.e. mental health) symptoms. It can start quite suddenly and symptoms may come and go over time.”
A spokesperson for County Durham and Darlington NHS Foundation Trust said: ‘Due to patient confidentiality, we are unable to comment specifically on Jessica’s experience.
‘We can confirm that our paediatric services and trained clinical teams work worldwide and refer patients appropriately.
‘We regret that Jessica’s mother is dissatisfied with some aspects of the care her daughter received, and she is now discussing these with our patient experience team.’
TikTok has been contacted for comment.