Beth was diagnosed with a mysterious condition known as PANS in 2022 when her whole personality instantly transformed – she now lives for just one day a week where she is strong enough to walk unaided
A teenage girl suffered a complete personality change as her world “fell apart in a matter of weeks” – making her instantly unrecognisable to friends and family.
Toni Shepherd, speaking about what her daughter, Beth, 16, was like before her shock diagnosis of a mysterious and little known condition, said: “She was really academic, in the top sets in school. She was mature. She was independent. She already had a job. She was doing fantastic – and then things just went wrong…”
Beth’s behaviour suddenly became disturbing and she would fly into fits of rage where her mum would often be beaten. The petrified and confused teenager struggled to recognise her family members and feared she would be kidnapped. Other times she hid under tables believing she was going to be murdered.
Her mum, who had to give up work five weeks after her daughter’s first symptom, said: “Absolutely terrifying. You cannot imagine. You have a baby, they hand you the baby on your chest and say, ‘Here is your healthy baby girl.’
“And that will never leave me, because the comparison to now… I don’t recognise her. On a good day I do. But when we are rolling around for two hours and I put myself between her and a wall so she can’t injure herself… It is like someone has flipped a switch and you don’t recognise that person in front of you.”
Toni, who had been a childminder before it became too dangerous to have other kids in the house with Beth, has now bravely spoken about her daughter’s complex condition for the first time, in the hope of raising awareness and getting her child the help she desperately needs.
Symptoms
The first symptom was an unusual one, and Toni, who is from Matlock, Derbyshire, said: “She started making strange noises. But I didn’t really address it. I left it because I know with Tourettes that sometimes the more you talk about it the worse it gets.”
Asked to describe the sound, she said: “Kapow! Kapow! She would be sat on the sofa watching telly and she would randomly go ‘kapow’. It was just odd. We didn’t try to make a thing of it.”
However, things escalated quickly, and Beth rang her mother from school one day with the ominous statement: “Mum, something is happening to me.” She thought she might be having a seizure and Toni said she was “jerking all over the place” when she arrived.
They rang an ambulance and at the hospital they were advised that it might be motor tics, despite the pain being “horrendous” for Beth because of how hard she was jerking. They were told to go home, return in a year, where they then might get a diagnosis of Tourettes.
Verbal tics came four days later but soon her personality and behaviour transformed. Describing the change, Toni said: “Really really rapidly, she became really anxious, she was paranoid, she was having hallucinations, she didn’t recognise her family, she thought we were going to kidnap her.
“She was screaming for me, I’m right in front of her, but she is screaming for me because she didn’t recognise me. And she thought I was a stranger. She thought the whole world was falling to pieces. Then the rages started, she would literally erupt, and excuse my language, but she would physically attack me. It was scary, it was really really scary.”
More symptoms arrived in the form of seizures, up to 80 a day, and despite lasting just a few seconds, they resulted in Beth falling to the floor.
She then started having paralysis for up to four days at a time because her body simply forgot how to work. After countless visits to A&E, Toni, completely desperate for answers, staged a sit-in, and begged someone from CAMHS (Child and Adolescent Mental Health Services) to see them.
Diagnosis
Beth also started having restrictive eating where she would refuse certain foods because they “came from a farm and farms were dirty”.
Along with irrational thoughts, she regularly smashed her head against the wall. They proved to be particularly devastating moments for the family that includes Beth’s younger sister, 11, who has been hugely impacted by her sibling’s decline.
However, eventually a diagnosis was found, and Toni remembered: “It was my mum. We had spent hours trawling the internet trying to find what the hell is happening.
“It was actually my mum who found PANS (Paediatric Acute-Onset Neuropsychiatric Syndrome) and she rang one day and said I’ve got it.’ I was a bit sceptical because so many symptoms overlap with different things but it was just spot on.”
She said there were 20 symptoms on a PANS criteria and at the time Beth had 19, before eventually developing the one she did not have.
It is a neuropsychiatric condition caused by a misdirected immune response to an unknown trigger causing inflammation in the brain and leads to both physical and psychiatric symptoms. These include rages, anxiety, tics, hallucinations, chronic fatique and pain, sleep difficulties and being unable to walk.
It is a syndrome that develops incredibly suddenly and impacts the physical and mental health of children and young adults. It can develop after common infection, and in Beth’s case, it may have appeared after she had Covid-19 in July 2021.
Despite being recognised by the World Health Organisation, there are no treatment guidelines for it in England, making Beth’s situation particularly turbulent.
Treatment / Fundraiser
Toni spent up to £8,000 finally getting Beth diagnosed privately and was prescribed antibiotics and steroids. The latter caused her to become manic, resulting in her climbing walls and thinking her skin was covered in spiders.
As of today, Beth now has invaluable chiropractic care every week that regulates her nervous system. If she does not attend, her mum notices symptoms immediately, and her daughter will become more agitated, fiery and in pain.
She also has counselling once a week, and all of these things are funded privately, with Toni stressing she has not been able to get any support. Toni has spent countless hours contacting every local statutory body in the hopes someone will take responsibility to provide what Beth needs to function – but said it has been a year of hitting brick walls.
However, after starting a GoFundMe in recent weeks to fund private care, more than £3,000 has been raised, meaning her daughter has started hyperbaric oxygen therapy.
And writing on the fundraiser, Beth, who is falling behind in her education because of the lack of support, said: “I haven’t given up on life; I’m still here and I am still fighting this debilitating illness. With your help, I hope to be able to strengthen my body and mind and become more like the person I was.”
The therapy, which involves breathing pure oxygen in a pressurized chamber, will hopefully reduce Beth’s inflammation and infection. That may lead to increase in energy and sleep (currently she only gets three hours per night).
Giving an insight into her daughter’s life now, Toni said: “She spends probably two to four days a week in a wheelchair. Another couple on her specialised crutches. She usually gets one day a week where she is mobile, but she has to have rested all the way up to that and needs to rest three days after.
“She lives for one day a week and that is the only light she has left.”
Toni hopes the alternative therapy will help with that and any proceeds from the fundraiser will go towards a possible purchase of a hyperbaric oxygen machine, adaptations to the house so Beth can live downstairs in her own space and eventually a therapy dog for support.
After sharing her own struggles as a mum, Toni spoke about the impact it has had on Beth herself, concluding: “Because it changes them so much it terrifies them.
“They are terrified and they don’t know what the hell is happening. You can’t sit back and watch your kids smash their head until it bleeds. There is no control. You don’t know what is going to happen in the next 10 seconds. People plan days ahead, weeks ahead, months ahead. We literally couldn’t and still can’t do that.”
To help Beth fight PANS, you can make a donation to her GoFundMe page here.