Doctors blame teenage girl’s rare neurological condition on ‘watching too much TikTok,’ her mother claims.
The ordeal for Helen Huitson’s daughter Jessica began when she started making “strange” body movements and “couldn’t sit still.”
Jessica, now 15, occasionally had difficulty controlling her body and soon began developing verbal tics, which ranged from repeating excuses to using insulting language.
She also began to suffer from non-epileptic seizures, up to 120 a day.
Although Jessica was taken to the hospital several times, her mother said she was distraught when doctors attributed the girl’s suffering to “fear.”
However, Mrs Huitson was further shocked when doctors claimed 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 and ‘couldn’t sit still’ in March 2021
After being hospitalized multiple times with seizures and paralysis, doctors blamed Jessica’s suffering on “fear”
Her experience came after UK clinicians reported that young women were developing tics as a result of the psychological pressures of the Covid lockdown.
Experts suspected that fears about the pandemic and climate change were causing susceptible young people to develop tics from social media influencers who shared their own symptoms online on social media sites like TikTok.
Although Ms. Huitson claims doctors initially thought Jessica’s tics, which began in 2021, were due to TikTok, she was later privately diagnosed with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS).
PANDAS is believed to be an autoimmune and neuropsychiatric disease caused by an abnormal immune response to an infection.
Charity PANDAS Network explains that it most often occurs after a strep infection. It can cause brain inflammation when the body’s immune system mistakenly attacks healthy brain cells, affecting the functioning of the central nervous system.
However, there is still limited research into PANDAS, meaning that some diagnoses are considered controversial and there are no formal medical guidelines for diagnosis in the UK.
She was eventually diagnosed with PANDAS – Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections – at a private clinic
PANDAS is believed to be an autoimmune and neuropsychiatric disease caused by an abnormal immune response to infection
Ms Huitson said she now wants to raise awareness about PANDAS after feeling ‘belittled’ by Jessica’s treatment at the University Hospital Of North Durham.
“She went from being completely able to do everything herself to being completely unable to do anything for herself, unable to walk, completely paralyzed at times and unable to talk,” she said.
‘I had never seen an attack in my life. They started and never stopped.
“We were told it was mental health issues, or anxiety. There was nothing we could do. Take her home.”
‘Someone at the hospital told us it was because I let her watch too much TikTok.
“It was ridiculous. We went to the hospital and were belittled. We weren’t believed and we had to fight to know what was really going on.
‘We were told that she may have been faking it or that it was because her mental health was poor.
‘It was really horrible. You see our child so sick and you don’t get the support you need and you don’t know where to go.
‘She was a normal 12-year-old girl and sometimes they feel a little bit anxious, but she was not an anxious child.
“They probably thought, ‘she’s 12, she’s going through puberty, it was the start of Covid,’ that was an easy label to put on it.
“I knew it wasn’t true and I was willing to fight to my grave to prove it.”
Ms Huitson believes her daughter developed PANDAS after contracting tonsillitis in October 2020, five months before her symptoms started.
According to another charity, PAN PANDAS UK, symptoms of PANDAS include anxiety, tics, depression, sudden deterioration in school performance, motor or sensory abnormalities and insomnia.
Ms. Huitson claims that within four weeks of Jessica’s first tic, the frequency of the tic increased dramatically. This was also when the attacks began.
She said, “Her arms started moving strangely, her legs started moving strangely. She was making strange movements in her neck. She’d never been like this before.
I said, “Jessica, what are you doing, why can’t you sit still?”
She said something like, “Mom, I can’t help it.”
‘She had no control over anything in her body. One moment she was jumping around like a tiger, the next she was stuck on the ground in a crouch.
‘The things that came out of her mouth were horrible and she couldn’t stop it.
‘Sometimes it was something really cute and funny, like, “Sorry, sorry, sorry about that.”
‘Other times it was the most horrific sentences, where she screamed, “She’s kidnapping me,” as I pushed 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 a girl who couldn’t be left alone and couldn’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 and insomnia, according to the PAN PANDAS UK website
After being diagnosed with PANDAS in a private ward, Jessica was referred to the NHS children’s ward in Darlington, but Ms Huitson claims the condition can only be treated to a limited extent there.
After receiving advice from a private immunologist and neurologist, Mrs. Huitson is now fundraising to put Jessica through IVIG treatment, a therapy that uses immunoglobulins to increase the amount of antibodies in the blood so her immune system no longer attacks healthy cells.
‘(Jessica) is a strong-willed and determined girl, but she is suffering terribly.
‘The immunologist has now indicated that she is eligible for IVIG.
“She’s not going to get better unless we try IVIG. It might put her in remission, it might not. It’s our last hope.
After receiving advice from a private immunologist and neurologist, Ms Huitson is now raising money to get Jessica IVIG treatment as a ‘last hope’, a therapy that uses immunoglobulins to help fight the infection
“We don’t even know how she’s going to respond to the treatment. There’s this fear that we don’t know how her body is going to respond to the IVIG. It’s a very scary time.
“Hopefully this will give her the remission she needs, but we don’t even know yet how many treatments she’ll need.”
Charity PANS PANDAS UK states: ‘PANDAS is a neuropsychiatric condition. This means that it is a medical condition which has both neurological (e.g. problems with thinking or movement) and psychiatric (e.g. mental health) symptoms. It can start quite suddenly and symptoms can come and go over time.’
A spokesperson for County Durham and Darlington NHS Foundation Trust said: ‘Due to the confidentiality of patient data, we are unable to comment specifically on Jessica’s experience.
‘We can confirm that our pediatric services and expert clinical teams function as one and refer patients appropriately.
“We regret that Jessica’s mother is unhappy with certain aspects of the care her daughter received. She is now discussing these aspects with our patient experience team.”
TikTok was contacted for comment.