A mother is speaking out after a six-year ordeal that began when her son developed a sore throat and ended when he was 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 a rash.
He then suffered long-term effects from the infection, which led to a series of new illnesses. Luke, now 15, is “just now getting his life back” after coming off antibiotics last year.
His mother, Susan Bates, said she lived in fear every day, “waking up not knowing if he was going to be there the next day.”
Luke Bates, then eight, was diagnosed with the bacterial infection in April 2016 when his family noticed he had a fever and a rash.
Luke (pictured) developed laryngitis and was unable to walk. He also suffered from a number of other illnesses
“He has been too ill to go anywhere for the past six years. This disease affected every part of his body. I had a baby to look after again,” said Ms Bates, 47, from Hertfordshire.
“I woke up not knowing if he would be there the next day.”
Luke was treated with antibiotics six years ago after his initial diagnosis of strep throat and scarlet fever, but his cough persisted.
The family were then told he had tonsillitis in January 2017 – followed by a diagnosis of glandular fever in March of the same year.
But Luke’s health continued to decline. He developed tics, was disabled and could not walk.
Ms Bates said: “He went from karate and street dancing overnight to being extremely ill. He developed tics and hallucinations and was running in circles and cutting his knees.
“He couldn’t sleep at night because his body wouldn’t stop twitching and he felt so sick that he couldn’t sleep.”
Doctors told Ms Bates and her husband Geoff, 46, in April 2017 that Luke had chronic fatigue syndrome (CFS) – an incurable long-term neurological condition that affects the nervous and immune systems.
But then, in February 2020, doctors discovered that Luke (pictured) was indeed suffering from pediatric autoimmune streptococcal neuropsychiatric disease (PANDAS) – after undergoing three operations to remove tonsillitis
Doctors told Ms Bates and her husband Geoff, 46, in April 2017 that Luke had chronic fatigue syndrome (CFS) – a terminal long-term neurological disease that affects the nervous and immune systems.
“We were told there was no cure and he might never recover, so we just had to move on,” she explained. “We were told that there was nothing they could do for him.”
But then, in February 2020, doctors discovered Luke did indeed have pediatric streptococcal autoimmune neuropsychiatric disorder (PANDAS) — after three surgeries to remove tonsillitis.
This is when the immune system attacks the brain. It occurs in children after a streptococcal infection such as strep throat or scarlet fever.
Ms Bates said: “They found the strep still lodged in his throat.
“After he started the antibiotics, he started to function again, but he kept getting infections that set him back.”
Luke was put on a long course of antibiotics and SSRIs and over the past two years he has gradually regained his strength.
Luke, now 15, (pictured) started going back to school in April 2021, but only for one hour at a time and for individual sessions. He still does not go to school with other children
However, his treatment was not without its setbacks as the teenager suffered multiple relapses and other symptoms including OCD, panic attacks and separation anxiety.
“Luke was too ill to go anywhere for six years. He slept in my bed for the last five years and I would never know if he would still be there the next day,” said his mother.
Finally he gets his life back. This year he is off antibiotics.
“He is back at school, but not yet in a class with other children. He studies English and maths and is now in remission from PANDAS.”
Luke went back to school in April 2021, but only for one hour at a time and for individual sessions. He is now happy and studying again, but not back at school with other children.
He was also diagnosed with ulcerative colitis in July 2022 – a chronic condition for which he is now in remission.
Ms Bates added: “It’s amazing how positive he is. He’s the most amazing boy you’ll ever meet. He’s so happy and cheerful. We’re so proud of him.”
What are the symptoms of Strep A? How does it spread? And is it the same as scarlet fever? Everything you need to know about the killer virus sweeping Britain
What is Strep A?
Group A Streptococci (Group A Strep or Strep A) can cause many different infections.
The bacteria are commonly found in the throat and on the skin, and some people have no symptoms.
Infections caused by Strep A range from mild illness to severe and fatal illness.
These include the skin infection impetigo, scarlet fever and strep throat.
While the vast majority of infections are relatively mild, the bacteria sometimes cause an illness called invasive group A streptococcal disease.
What is invasive group A streptococcal disease?
Invasive group A streptococcal disease is sometimes a life-threatening infection where the bacteria have invaded parts of the body, such as the blood, deep muscles or lungs.
Two of the most serious but rare forms of invasive disease are necrotizing fasciitis and streptococcal toxic shock syndrome.
Necrotizing fasciitis, also known as “flesh-eating disease,” can occur when a wound becomes infected.
Strep-toxic shock syndrome is a rapidly progressive infection that leads to low blood pressure/shock and damage to organs such as the kidneys, liver and lungs.
This type of toxic shock has a high mortality rate.
READ MAILONLINE’S FULL Q&A ABOUT STREP A.
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Crystal Leahy is an author and health journalist who writes for The Fashion Vibes. With a background in health and wellness, Crystal has a passion for helping people live their best lives through healthy habits and lifestyles.
