Doctors told mum her daughter's symptoms were scarlet fever - but she knew something was off

A mum has recalled the shocking moment her four-year-old daughter was diagnosed with a rare condition – which was wrongly diagnosed as scarlet fever.

Magdalena Allen, 31, who runs creative workshops in Edinburgh, Scotland, says after months of trying to get to the bottom of her daughter’s illness, she has been left emotionally and mentally ‘drained’. In October 2022, the mum was told her daughter Maya had scarlet fever.

Maya, who turns five in March, had a persistent high fever, red cheeks, and a white coating over her tongue. She was given antibiotics but became poorly again just weeks later.

Maya had a persistent high fever, red cheeks, and a white coating over her tongue

Speaking to EdinburghLive, mum-of-two Magdalena said: “We kept taking her to the doctors and they said she must be immune to the antibiotics, so they tried another type. It would go away but always come back a few weeks later.”

“Between October 2022 and May 2023, she had been treated for scarlet fever 10 times. And she wasn’t getting better. I just knew something wasn’t right and I started doing my own research. Maya started getting swollen lymph nodes and was struggling to breathe.”

“Maya kept waking up from a fever and a rash, and she was struggling to breathe. It was really hard. I would have to sleep next to her but I always felt like I was watching over her to make sure she was breathing. It was mentally and emotionally draining for us all. It’s awful being a parent and seeing your child sick, and not being able to help. It was very scary.”

She added: “When I was doing my own research I saw something called Periodic Fever, Aphthous stomatitis, Pharyngitis and Adenitis (PFAPA), and all the symptoms were the same. When I asked my GP about it, he just dismissed it. But they wouldn’t give her any blood tests either. It was awful just not knowing what was happening to her.”

It wasn’t until Magdalena went to Poland, her home country, in November last year that a doctor confirmed her theory, telling her that Maya had PFAPA. Helen Lachmann, Professor of Medicine at UCL, said while the condition is rare, it’s most commonly seen in young children aged 18 months up to five years. PFAPA is not life-threatening, and children can often grow out of it and receive treatment.

At one point, Maya started getting swollen lymph nodes and was struggling to breathe

Symptoms can appear similar to scarlet fever, but PFAPA is a recurring fever that can be treated with steroids or with a tonsillectomy.

Magdalena said: “I had been keeping a note, a calendar, of all of Maya’s fare ups. In Poland, they tested her for Strep A during one of her flares up, and it came back negative. Because we excluded other illnesses, it meant she had PFAPA.”

Despite Magdalena finally getting an answer, she said her local GP told her that he had never heard of PFAPA and couldn’t prescribe the same steroids from Poland that had helped Maya.

The mum said: “PFAPA isn’t life-threatening. But it affected our lives. Maya has missed out on nursery, she’s meant to be going into primary school this year and she hasn’t had the life that children should have. She can’t play with her friends when she has a flare-up and stays inside for a week. It has been a very hard time for the family.”

Magdalena opted for a private clinic to obtain a scan of Maya’s throat after she noticed a lump, which confirmed her lymph nodes had swollen. Maya was then scheduled to have her tonsils and the lump removed at the beginning of February. Magdalena is hoping the procedure will get rid of the remaining PFAPA symptoms.

She said: “She’s recovering well. We’re just hoping she will be better. I think if parents think their children have it, they need to keep a calendar of when the flare-ups happen. I don’t think there is that much knowledge here about PFAPA in the UK, it is more known in Europe. Maybe because Maya is half Polish and half Scottish she was prone to it. If we had known about it sooner, Maya wouldn’t have had to go through all those months of antibiotics that weren’t doing anything.”

Professor Helen Lachmann said there isn’t currently a single test for PFAPA – but has encouraged parents to keep an eye out for flare-ups.

She said: “Most children can get it between the ages of 18 months and five years old. The attacks can show some of the symptoms but don’t have to be all of them. Along with a fever that lasts around three to six days, symptoms can include mouth ulcers (aphthous stomatitis), sore throat (pharyngitis) and swollen glands in the neck (adenitis).”

“When parents do track the flare-ups, they will realise that they do come regularly. It could be every four weeks, six weeks, or a couple of months. But this means families can plan around it. There will also be a few days’ warning before.”

“It is not life-threatening or infectious, but it takes more of a toll on family life and affects the family more than anything. Some children can grow out of it, but in other cases, it can take up to 10 years. There is a small number of adults who can still have it. Children with PFAPA don’t have a weak immune system, it actually means that they are better at fighting infections than most of us. There are treatments such as steroids and taking out the affected tonsils has also proved helpful for a number of studies.”

She added: “GPs are used to treating infections, so I do have sympathy for them. But paediatricians do know about PFAPA and they will be able to help.”

“For parents, trust yourself. Keep a diary of symptoms. It is the pattern that is important and is incredibly helpful when you present it to a GP or a paediatrician. It will get better.”