Mum's 'scarlet fever' warning after symptoms lead to daughter being diagnosed with rare condition

A Scots mum has told how her daughter was left struggling to breathe before being diagnosed with a rare condition. Magdalena Allen says she has been left emotionally and mentally ‘drained’ after battling to find out what was causing little Maya’s symptoms.

The 31-year-old, from Edinburgh, was told the youngster had scarlet fever in October 2022 after suffering from a fever that wouldn’t break, red cheeks and a white coating on her tongue. The now four-year-old was given antibiotics and appeared to be on the mend before calling ill again just weeks later.

The mum-of-two told Edinburgh Live: “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.” After being convinced something still wasn’t right, Magdalena began carrying out her own research before discovering a rare condition.

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She explained: “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.”

Magdalena travelled to her home country Poland in November 2023 and took Maya to a doctor who confirmed she had PFAPA. Helen Lachmann, Professor of Medicine at UCL, told Edinburgh Live that while it is a rare condition, it isn’t life-threatening. Children can often grow out of it and receive treatment.

While symptoms are similar to scarlet fever, it is a recurring fever that can be treated with steroids or with a tonsillectomy. “I had been keeping a note, a calendar, of all of Maya’s flare ups,” Magdalena said, “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.”

While Magdalena finally had an answer, she said her local GP told her that he had never heard of PFAPA and couldn’t prescribe the steroids from Poland that had helped her daughter. 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 decided to go to a private clinic for a scan of Maya’s throat after she noticed a lump, which confirmed her lymph nodes had swollen.

She was then scheduled to get her tonsils out and the lump removed at the start of February – an operation Magdalena hopes will see off the rest of the PFAPA symptoms. “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 that there isn’t a single test for PFAPA but encourages parents to track 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.”

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