Magdalena Allen, from Edinburgh, says she has been left emotionally and mentally 'drained' after battling to find out what was causing little Maya's symptoms.
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.
"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.
She explained: “I saw something called Periodic Fever, Aphthous stomatitis, Pharyngitis and Adenitis , 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." 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.
"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."
"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.
Australia Latest News, Australia Headlines
Similar News:You can also read news stories similar to this one that we have collected from other news sources.
When red flags are just office decoration: Edinburgh Uni's Oracle IT disasterManagement either weren't told about risks or ignored them, report finds
Read more »
Edinburgh to New York flight probe focused on engine vibrationA flight from Edinburgh to New York made an emergency landing last February after an engine failure.
Read more »
Scots boy battling brain tumour takes on Kiltwalk despite gruelling chemoLochlan 'Lochi' McCready, from Edinburgh, has been hailed a “wee champ” by proud mum Cheryl, who will be by his side as he takes on the mammoth challenge in September.
Read more »
Derrylin: Judge considers if Daniel Allen will ever be releasedDaniel Allen admits killing a woman, her two children and a grandchild in Derrylin in 2018.
Read more »
Christian Brueckner’s lawyer brags he’ll get Madeleine McCann suspect OFF rape charges he’s facingMadeleine McCann prime suspect Christian Brueckner facing trial for alleged rape of Irish mum Hazel Behan
Read more »
Moment fire rips through Leeds home before doorbell saves mum and six kidsMum-of-seven Tina Mason was fast asleep during the early hours of Monday morning
Read more »