Mum wants all parents to know how chicken pox led to condition that destroyed her daughter's life

A mum has shared how her daughter's health entered a downward spiral beginning with a case of chicken pox and culminating in a mystery condition that "destroyed" her life.

Lucy Wheeler, 44, from Kettering, Northampton, said her world turned upside down when her daughter Scarlett, now 14, was left unable to walk for three months, reverted to being like a "baby" and would even grab a knife during hallucinations. She could swing from being suicidal to trying to harm other people. It was a nightmare transformation of Scarlett - described as a "happy, bright and sociable girl"- that her mother had witnessed in the years since she initially fell ill with chickenpox, treated with antibiotics when she was just five years old.

Chickenpox was just the beginning. Scarlett then developed the "worst case scenario" of pneumonia and began to suffer from delayed speech, memory difficulties and noise sensitivity. "And then the neurologic deterioration came after," Lucy told The Mirror. "She started getting extremely low, with a severe level of depression and was complaining of a headache. She was really confused and developed a tic in her eyes."

The worried mum suspected that she could have a brain tumour due to "huge emotional outbursts and really severe separation anxiety". But all of the tests came back as normal and the mum was left struggling for answers. For the next few years, every time Scarlett developed the slightest virus such as a cold or even being around someone else who was ill, she would fall back into the same pattern.

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But in May 2018, she took a "drastic turn for the worse" when she caught tonsillitis. This time she stopped eating and experienced "huge emotional regression" and began to "behave like a baby" and have "really aggressive outbursts." During a family trip to Majorca later that year, when Scarlett was nine, Lucy recalled how her daughter was hospitalised. "We had to have a pushchair because she couldn't walk. She was hospitalised and needed rehydration."

Scarlett returned to school in September. "The school said she [could no longer ] do her times tables that she could do. It took two teachers to even get her in the classroom. Her whole writing just completely went." Explaining the violent episodes, which her daughter still experiences now, Lucy said: "She will hit, kick, grab you around the throat. She tries to push you down, stamp on your chest, she slams doors and she shouts." The mum further explained that her daughter suffered from hallucinations. "And with the hallucinations, she used to see marks on her face and try and get rid of them with a knife."

Lucy added: "She wakes up in the night saying she can't breathe. She's like, 'I think I'm getting a virus. I'm going to be ill. I can't do this anymore." Despite endless trips to their local hospital and GP, Lucy was nowhere nearer to finding the root of the issue. It wasn't until a SENCO (special educational needs and/or disabilities coordinator) at Scarlett's school suggested that she should see a doctor about the condition PANS in 2018, that they were able to get a diagnosis.

Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) is thought to be autoimmune disorders that occur when the body's immune system mistakenly attacks the brain. The condition causes a sudden onset of obsessive-compulsive symptoms (OCD) or eating restrictions, which is also linked to acute behavioural deterioration. Its signs fall in line with Scarlett's symptoms and can also be grouped similarly with the condition PANDAS, which is the body's response to a strep infection.

According to the charity PANS PANDAS, there is currently no specific test which will prove or disprove the condition which means a diagnosis is made based on the patient’s medical history, a review of their current symptoms and a physical examination.

Lucy added: "At that point, the SENCO of her primary school mentioned PANS which was really lucky because most people have no knowledge of it."

The family finally got a PANS diagnosis after seeking help privately, but Lucy said that a failure to diagnose Scarlett sooner meant that most of the "damage" was already done. "Because it's been allowed to carry on and on, and because she had it so long before treatment, from the age five to nine-and-a-half, there was a lot of damage done in those early years. So that area of her education was gone," Lucy explained.

The available treatment involves administering antibiotics any time Scarlett's health issues flare up from contracting a virus including a sore throat - but this caused a further problem as she was initially diagnosed through a private appointment. Scarlett couldn't get the antibiotics needed on the NHS because many doctors still fail to recognise the condition, which remains largely unknown by medical professionals.

Lucy, who was previously a trainee midwife, continued: "Every time she got a virus, she would flare. So although we got the diagnosis, we got that privately because we couldn't get that on the NHS."

However, in researching her daughter's condition, Lucy did manage to find an NHS doctor who was able to help. She said: "I googled it and saw Professor Rajat Gupta, a neurologist at Birmingham Children’s Hospital. He gave us three days of a strong antibiotic and she slept in overnight and went back to school happy. She picked up neurologically.

"Eventually, Professor Gupta was able to transfer us to his NHS list, but we still had to pursue private courses of antibiotics, because we were unable to get them prescribed through our local trust. So we spent at least £30,000 on antibiotics, blood tests, numerous things."

There is no guidance on the diagnosis and treatment on PANS or PANDAS on the NHS at this time. Speaking about her daughter's development, Lucy explained: "If she gets a virus, you can see it has become better as she's got older, but a lot of damage is irreversible. So now, Scarlett can't settle, she can't sleep and she paces around everywhere." The mum added that the 14-year-old is "emotionally really immature and extremely vulnerable."

Lucy continued: "She can't read properly now, she can't understand words. She struggles with basic things like even washing her hair. She's a full-time job. She's one of four and she was a happy girl. She was an easy baby and an easy toddler. She was everything that all of my others had been. And now, because it's gone on so long, we won't get that side of her back."

Over the years, Scarlett has become suicidal due to her life being "pretty bleak". Her mum said: "A lot of times she'll be suicidal and all the GPs will throw at her is Prozac which she's on. We obviously take the right precautions and everything in our house is locked away, but quite honestly, I don't know that we will get her to adulthood. She doesn't have a chance at education, she doesn't stand a chance at much employment and she doesn't have friends because she can't really mix. It's very difficult to see any type of future for her."

In January, Scarlett started the Grange Therapeutic School in Oakham, which is an hour away from where she lives. But it took her parents countless tries with their local authority to finally get her moved out of a mainstream secondary school. They had applied for her to get an education, health and care (EHC) plan which offers people up to 25 further help through special educational needs support.

"They declined the whole process. But eventually, she was accepted last year," the mother explained. Lucy added that her family are facing more battles as Scarlett is suspected to have since developed autism and ADHD. She continued: "Professor Gupta said It feels like she is autistic and has ADHD. But actually, PANS is linked to that if it is not treated, so it has now spiralled. Unfortunately, it doesn't look like she'll ever live independently."

The mum said PANS took a toll on her mental health and explained that she finds it difficult to see Scarlett struggling with the ongoing symptoms. "It completely destroyed my own mental health. It was traumatic for me back then," she said.

Lucy hopes that sharing her family's story will "stop somebody else going through this and stop another child from having the life Scarlett is facing." She said: "It really is an awful thing and it could be so simple if all GPs and schools were just aware of it. This would have been easier, she could have been treated every time and she wouldn't have got that bad."

Professor Gupta said PANS is likely "under-recognised, under-diagnosed and under-treated" and stressed that adults and young people can also pick up the condition. He told The Mirror: "Unfortunately, PANS is still not universally accepted by health professionals as a condition/disease entity.

"The diagnosis is currently seen by some in the profession as being controversial. This is because there is currently no diagnostic marker for PANS/PANDAS. Also, some professionals say children often have infections and children often have behaviour problems and thus how can we be sure they are related?"

Professor Gupta said healthcare professionals should "understand that children presenting with an abrupt onset of significant behavioural issues may have PANS/PANDAS which could be easily treated with a short course of antibiotics - two weeks."

The specialist, who has diagnosed around 100 kids with PANS or PANDAS so far, is encouraging doctors to be "open" to the condition and to look at potential new avenues for treatment. He continued: "There is currently working groups of relevant stakeholders in the UK, brought together by [ the charity ] PANS PANDAS UK looking at performing a surveillance study to try and determine the prevalence of PANDAS and to develop a national consensus on the diagnosis and treatment of PANS/PANDAS.

"If we are able to achieve a national consensus, I am hopeful that there will be improved understanding and acceptance of PANS/PANDAS. Children will then be diagnosed and treated sooner. Children and their parents will feel listened to. A multidisciplinary approach to management, including various medical specialists, education and families is what we should be striving for."

A spokesperson for PANS PANDAS UK said: "PANS and PANDAS are post-infectious neuropsychiatric disorders. They develop suddenly in the wake of common infections such as Strep A, Covid-19 and Chickenpox when a misdirected immune response causes subtle changes in the brain. Current low levels of awareness of these conditions amongst doctors means that access to appropriate diagnosis and healthcare is challenging.

"If a GP is unaware of the conditions, it is unlikely that they will consider if there could be a medical cause for what might appear to be purely mental health-related symptoms. Even for those with a diagnosis, we know that there is huge variation in how people with these conditions are being treated by the NHS. PANS PANDAS UK are working with NHS England, medical royal colleges and interested clinicians to address the variation in care available on the NHS."