A mum has spoken out about her family's horrifying six-year ordeal after her son contracted strep throat - which left him unable to walk. Luke Bates, then eight, was diagnosed with the bacterial infection in April 2016 when his family noticed he had a fever and rash.
But then what followed saw mum Susan Bates, 47, left fearing she would lose her son on a daily basis. Thankfully Luke, now 15, is happy and learning again - although he is still not fully back in school with other children.
Susan, a PA from Welwyn Garden City, Hertfordshire, said: "I would wake up not knowing if he would be there the next day. He was too ill to go anywhere for the last six years.
"This illness took over every part of his body. I had to look after a baby again."
Luke was given antibiotics after his initial diagnosis of strep throat and scarlet fever six years ago but his cough persisted.
The family were then told he had tonsillitis in January 2017 - followed by a glandular fever diagnosis in March of the same year.
But Luke continued to go downhill - developing tics, becoming non-functioning and unable to walk.
Susan said: "He went from doing karate and street dancing to being extremely ill overnight.
"He developed tics and would have a hallucinations and run around in circle cutting his knees.
"He was unable to sleep at night as his body wouldn't stop jolting and he felt so sick he couldn't sleep."
In April 2017 doctors told Susan and her husband, Jeff, 46, a health and safety consultant, that Luke had chronic fatigue syndrome (CFS).
This is a long-term neurological condition that affects the nervous and immune systems - for which there is no cure.
Susan said: "We were told there was no cure and that he might never recover so we just had to get on with it. We were told there was nothing they could do for him."
But then in February 2020 doctors discovered Luke actually had paediatric autoimmune neuropsychiatric disorders associated with streptococcus (PANDAS) after three operations to remove tonsillitis.
PANDAS - when the immune system attacks the brain - can occur when obsessive-compulsive disorder (OCD), tic disorder, or both suddenly appear following a streptococcal (strep) infection, such as strep throat or scarlet fever.
Susan said: "They discovered the strep was still in his throat.
"He started functioning again after starting the antibiotics, but he'd constantly get infections that would set him back."
Luke was put on a long course of antibiotics and SSRIs and gradually, over the last two years, he has been able to get his strength back.
It's not been without setbacks though, with the teen having multiple relapses and suffering other symptoms such as OCD, panic attacks and separation anxiety.
Luke started going back to school in April 2021, but only for an hour at a time and for one-to-one sessions.
However earlier this year in July, he was also diagnosed with ulcerative colitis - where the colon and rectum become inflamed - which he is now in remission for.
Susan said: "Luke was too ill to go anywhere for six years. He’s slept in my bed for the last five years and I’d never know if he's been there the next day.
"Finally he is getting his life back. This year he's come off the antibiotics.
"He's back at school but not in a classroom with other children yet. He's learning English and Maths and now he is in remission for PANDAS."
She added: "It's amazing how positive he is. He's the most amazing boy you'll ever meet. He's so happy and bright. We're so proud of him."
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