'RIDICULOUS'
My daughter, 15, had 120 seizures a day – but doctors said she was simply ‘spending too much time on TikTok’
The 15-year-old will sometimes tell strangers in the street that her mum is kidnapping her
A MUM is claiming doctors blamed her daughter's rare neurological condition on her simply being allowed to 'watch too much TikTok'.
Helen Huitson's daughter Jessica Huitson began experiencing 'strange' bodily movements in March 2021 and appeared 'unable to sit still'.
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Jessica, now 15, was unable to control her body and soon began developing verbal tics too, which ranged from repeating apologies to abusive language.
Around the same time that the Tourette's developed, Jessica began struggling with non-epileptic seizures, experiencing up to 120 a day.
Despite being taken into hospital multiple times her mother said she was left distraught when doctors blamed the young girl's suffering on "anxiety".
However, her 49-year-old mum was even more appalled when she claims they suggested her daughter was simply watching too much TikTok or she was 'faking it' by copying symptoms she had seen online.
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Her experience came in the wake of British medics reporting that an 'explosion' of kids were developing tics as a result of the psychological pressures of the Covid lockdown.
The business engagement manager says her daughter was finally privately diagnosed with PANDAS - Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.
PANDAS is believed to be an autoimmune disorder and neuropsychiatric condition promoted by an abnormal immune response to infection.
Charity PANDAS Network explains it most commonly occurs after a strep infection. It can cause brain inflammation if the body's immune system mistakenly attacks healthy brain cells affecting central nervous system function.
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However, research on PANDAS is limited, meaning some diagnoses are considered controversial, and there are no formal medical guidelines for diagnosis in the UK.
Helen now hopes to raise awareness about advocating for the rare condition after feeling 'belittled' by University Hospital Of North Durham's treatment of Jessica.
A Guide to Common Childhood Illnesses and Treatments
"She went from being fully able, doing everything for herself to being unable to do anything for herself, unable to walk, sometimes being fully paralysed, unable to talk," she said.
"I'd never seen a seizure in my life before. They started and just never stopped.
"We were told 'it's mental health, it's anxiety, there's nothing we can do, take her home'.
"We were told by somebody in the hospital that it was brought on because I was allowing her to watch too much TikTok.
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"It was ridiculous. We'd go into the hospital and be belittled. We weren't believed and we had to fight to know what was really going on.
"We were told she was potentially faking it or that it was because her mental health was bad.
"It was absolutely horrendous. You watch our child be so poorly and you can't get the support you need and you don't know where to turn.
"She was a normal 12-year-old girl and they do sometimes feel a bit of angst but she wasn't an anxious child.
She went from being a normal 12-year-old girl that could do what she wanted to do, go out with friends and have a normal school life to being a girl that can't be left alone, can't attend school
Helen Huitson
"They probably thought 'she's 12, heading into puberty, it was the start of Covid', that was an easy label to give it. It was an easy option in a complex case.
"I knew it wasn't true and I was prepared to fight to the grave to prove it."
'NO CONTROL OVER ANYTHING'
Helen believes Jessica developed PANDAS after contracting tonsillitis in Oct 2020, five months before the symptoms started.
Symptoms of PANDAS includes anxiety, tics, depression, sudden deterioration in school performance, motor or sensory abnormalities as well as insomnia, according to another charity PAN PANDAS UK.
Helen claims that within four weeks of Jessica's first tic, they then dramatically increased in frequency this was also when the seizures began.
She said: "Her arms started moving strangely, her legs did. She was making strange movements in her neck. She'd never been like this before.
"I was saying 'Jessica, what are you doing, why can't you sit still?'
"She was like 'Mum, I can't help it'.
"She had no control over anything in her body. One minute she was jumping around like a Tigger, the next she was stuck on the floor in a squat.
"The things that came out of her mouth were horrendous and she had no ability to stop it.
"Sometimes it'd be something quite cute and funny like 'sorry, sorry, sorry about that'.
"Other times it would be the most horrific sentence where she was shouting 'she's kidnapping me' as I'm pushing her down the street in a wheelchair.
"She went from being a normal 12-year-old girl that could do what she wanted to do, go out with friends and have a normal school life to being a girl that can't be left alone, can't attend school.
After being diagnosed with PANDAS privately, Jessica was brought into the NHS paediatric department at Darlington, however, Helen 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 get Jessica IVIG treatment, a therapy that uses immunoglobulins to boost the antibody levels in the blood, to help stop her immune system from attacking healthy cells.
"[Jessica's] a very strong willed and determined girl but she suffers horrendously.
"The immunologist has now said she can be put forward for IVIG.
"She won't get any better unless we try IVIG. It could put her in remission but it might not. It's our last hope.
"We don't know how she will even react to the treatment.
"There's the fear that we don't know how her body will react to the IVIG. It's a really scary time.
"Hopefully, this will give her the remission she needs but we don't even know how many treatments she will need."
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Charity PANS PANDAS UK states: "PANDAS is a neuropsychiatric condition.
"This means it is a medical condition which has both neurological (eg. difficulties with thinking or moving) and psychiatric (ie. mental health) symptoms.
"It can begin quite suddenly, and symptoms may come and go over time."
'WE ARE SORRY'
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 skilled clinical teams work trust-wide, referring patients appropriately.
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"We are sorry that Jessica's mum is unhappy with aspects of the care her daughter has received which she is now discussing with our patient experience team."
TikTok was contacted for comment.
The signs and symptoms of PANS and PANDAS
PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.
It's a rare condition that causes a child to suddenly develop neurological symptoms after a streptococcal infection, like strep throat or scarlet fever.
Symptoms can be so severe that parents may say their child seems to have "changed overnight"
PANDAS usually starts with an acute onset of obsessive-compulsive disorder and/or tics.
Symptoms can come and go and children may experience flares following illness or periods of stress.
Those affected are usually between the ages of three and puberty when first symptoms occur.
They usually appear following a streptococcal infection such as sinusitis, ear infections or scarlet fever.
Other symptoms of PANDAS include:
- Restricted food intake
- Developmental regression
- Anxiety
- Depression
- Irritability
- Hallucinations and delusions
Treatments for PANDAS may include:
- Antibiotics to treat and prevent strep or other bacterial infections
- Antiviral if viral infections are persistent
- Intravenous immunoglobulin treatments
- Plasmapheresis or Plasma Exchange
- Steroids
- Tonsillectomy and adenoidectomy
- Cognitive behavioral therapy and/or exposure and response prevention
If left untreated, PANDAS can cause permanent problems.