My daughter, 15, had 120 seizures a day – but doctors said she was simply ‘spending too much time on TikTok’

A MUM is claiming docs blamed her daughter’s uncommon neurological situation on her merely being allowed to ‘watch an excessive amount of TikTok’.

Helen Huitson’s daughter Jessica Huitson started experiencing ‘unusual’ bodily actions in March 2021 and appeared ‘unable to take a seat nonetheless’.

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Jessica, now 15, was unable to manage her physique and shortly started growing verbal tics too, which ranged from repeating apologies to abusive language.

Across the identical time that the Tourette’s developed, Jessica started scuffling with non-epileptic seizures, experiencing as much as 120 a day.

Regardless of being taken into hospital a number of instances her mom mentioned she was left distraught when docs blamed the younger woman’s struggling on “anxiousness”.

Nonetheless, her 49-year-old mum was much more appalled when she claims they instructed her daughter was merely watching an excessive amount of TikTok or she was ‘faking it’ by copying signs she had seen on-line.

Her expertise got here within the wake of British medics reporting that an ‘explosion’ of youngsters had been growing tics as a results of the psychological pressures of the Covid lockdown. 

The enterprise engagement supervisor says her daughter was lastly privately identified with PANDAS – Paediatric Autoimmune Neuropsychiatric Issues Related to Streptococcal Infections.

PANDAS is believed to be an autoimmune dysfunction and neuropsychiatric situation promoted by an irregular immune response to an infection.

Charity PANDAS Community explains it mostly happens after a strep an infection. It could actually trigger mind irritation if the physique’s immune system mistakenly assaults wholesome mind cells affecting central nervous system operate.

Nonetheless, analysis on PANDAS is proscribed, which means some diagnoses are thought-about controversial, and there aren’t any formal medical tips for analysis within the UK.

Helen now hopes to lift consciousness about advocating for the uncommon situation after feeling ‘belittled’ by College Hospital Of North Durham’s therapy of Jessica.

“She went from being absolutely ready, doing all the things for herself to being unable to do something for herself, unable to stroll, typically being absolutely paralysed, unable to speak,” she mentioned.

“I might by no means seen a seizure in my life earlier than. They began and simply by no means stopped.

“We had been advised ‘it is psychological well being, it is anxiousness, there’s nothing we are able to do, take her residence’.

“We had been advised by any individual within the hospital that it was introduced on as a result of I used to be permitting her to look at an excessive amount of TikTok.

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“It was ridiculous. We might go into the hospital and be belittled. We weren’t believed and we needed to combat to know what was actually happening.

“We had been advised she was doubtlessly faking it or that it was as a result of her psychological well being was unhealthy.

“It was completely horrendous. You watch our baby be so poorly and you’ll’t get the help you want and you do not know the place to show.

“She was a standard 12-year-old woman they usually do typically really feel a little bit of angst however she wasn’t an anxious baby.

She went from being a standard 12-year-old woman that might do what she wished to do, exit with pals and have a standard faculty life to being a lady that may’t be left alone, cannot attend faculty

Helen HuitsonJessica’s mum

“They most likely thought ‘she’s 12, heading into puberty, it was the beginning of Covid’, that was a straightforward label to provide it. It was a straightforward choice in a posh case.

“I knew it wasn’t true and I used to be ready to combat to the grave to show it.”

‘NO CONTROL OVER ANYTHING’

Helen believes Jessica developed PANDAS after contracting tonsillitis in Oct 2020, 5 months earlier than the signs began.

Signs of PANDAS contains anxiousness, tics, melancholy, sudden deterioration at school efficiency, motor or sensory abnormalities in addition to insomnia, in response to one other charity PAN PANDAS UK.

Helen claims that inside 4 weeks of Jessica’s first tic, they then dramatically elevated in frequency this was additionally when the seizures started.

She mentioned: “Her arms began shifting unusually, her legs did. She was making unusual actions in her neck. She’d by no means been like this earlier than.

“I used to be saying ‘Jessica, what are you doing, why cannot you sit nonetheless?’

“She was like ‘Mum, I can not assist it’.

“She had no management over something in her physique. One minute she was leaping round like a Tigger, the following she was caught on the ground in a squat.

“The issues that got here out of her mouth had been horrendous and he or she had no capacity to cease it.

“Typically it would be one thing fairly cute and humorous like ‘sorry, sorry, sorry about that’.

“Different instances it might be essentially the most horrific sentence the place she was shouting ‘she’s kidnapping me’ as I am pushing her down the road in a wheelchair.

“She went from being a standard 12-year-old woman that might do what she wished to do, exit with pals and have a standard faculty life to being a lady that may’t be left alone, cannot attend faculty.

After being identified with PANDAS privately, Jessica was introduced into the NHS paediatric division at Darlington, nonetheless, Helen claims they’re restricted in how they’ll deal with the situation.

After receiving recommendation from a non-public immunologist and neurologist, Ms Huitson is now fundraising to get Jessica IVIG therapy, a remedy that makes use of immunoglobulins to spice up the antibody ranges within the blood, to assist cease her immune system from attacking wholesome cells. 

“[Jessica’s] a really sturdy willed and decided woman however she suffers horrendously.

“The immunologist has now mentioned she could be put ahead for IVIG.

“She will not get any higher except we attempt IVIG. It may put her in remission nevertheless it won’t. It is our final hope.

“We do not understand how she is going to even react to the therapy.

“There’s the concern that we do not understand how her physique will react to the IVIG. It is a actually scary time.

“Hopefully, this may give her the remission she wants however we do not even know what number of remedies she is going to want.”

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Charity PANS PANDAS UK states: “PANDAS is a neuropsychiatric situation.

“This implies it’s a medical situation which has each neurological (eg. difficulties with considering or shifting) and psychiatric (ie. psychological well being) signs.

“It could actually start fairly all of the sudden, and signs could come and go over time.”

‘WE ARE SORRY’

A spokesperson for County Durham and Darlington NHS Basis Belief mentioned: “On account of affected person confidentiality, we’re unable to remark particularly on Jessica’s expertise.

“We are able to verify that our paediatric companies and expert scientific groups work trust-wide, referring sufferers appropriately.

“We’re sorry that Jessica’s mum is sad with elements of the care her daughter has obtained which she is now discussing with our affected person expertise workforce.”

TikTok was contacted for remark.

The indicators and signs of PANS and PANDAS

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Issues Related to Streptococcal Infections.

It is a uncommon situation that causes a baby to all of the sudden develop neurological signs after a streptococcal an infection, like strep throat or scarlet fever. 

Signs could be so extreme that folks could say their baby appears to have “modified in a single day”

PANDAS often begins with an acute onset of obsessive-compulsive dysfunction and/or tics.

Signs can come and go and youngsters could expertise flares following sickness or intervals of stress.  

These affected are often between the ages of three and puberty when first signs happen.

They often seem following a streptococcal an infection akin to sinusitis, ear infections or scarlet fever.  

Different signs of PANDAS embody:

Restricted meals intakeDevelopmental regressionAnxietyDepressionIrritabilityHallucinations and delusions 

Therapies for PANDAS could embody:

Antibiotics to deal with and stop strep or different bacterial infectionsAntiviral if viral infections are persistentIntravenous immunoglobulin treatmentsPlasmapheresis or Plasma ExchangeSteroidsTonsillectomy and adenoidectomyCognitive behavioral remedy and/or publicity and response prevention

If left untreated, PANDAS may cause everlasting issues.