Terrified teen called mum saying ‘something’s wrong’ – days later she didn’t recognise her

A teenage girl named 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

Beth suffered a complete personality change as her world “fell apart in a matter of weeks” – making her instantly unrecognisable to family and friends.

Toni Shepherd, speaking about what her daughter, Beth, 16, was like before her 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…”

The behaviour of Beth suddenly became disturbing and she would fly into fits of rage where her mum would often be beaten. The teenager struggled to recognise her family members and feared she would be k..idnapped. Other times she hid under tables believing she was going to be mu..rde.red.

Her mum had to give up work five weeks after her daughter’s first symptom. “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.’, she said.

“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. She hopes to raise awareness and get 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.”

Yet, 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 when arriving 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.

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