A few weeks ago, Maureen Jenkins, Director of Clinical Services for Allergy UK, asked me whether I could share Jumpy’s ‘journey to diagnosis’ at a masterclass on paediatric food allergy and eczema for GPs. I was not sure what to expect, but I knew one thing: I could certainly talk about what Jumpy had gone through! I was excited to be involved and did not hesitate for a second.
The speakers were Dr Adam Fox, Consultant Paediatric Allergist from St Thomas’ Hospital and Reader at King’s College; Dr Carsten Flohr, Consultant Paediatric Dermatologist at St Thomas’ Hospital; Dr Rosan Meyer, Consultant Paediatric Allergy Dietician at Great Ormond Street Hospital and Imperial College. If you know anything about allergies, you will have heard those names.
Strangely enough, at no point did I feel stressed at the prospect of speaking in front of a room full of doctors. I am conscious that public speaking might not be everyone’s cup of tea, probably even less so in front of medical professionals and three renowned specialists… but I was not there to give them a lecture. I was there to talk about something close to my heart and I am hoping that following this masterclass, GPs in attendance will be better equipped to spot the signs of allergy and speed up diagnosis.
Last week, Maureen asked me to write a précis of our journey to diagnosis, starting with Jumpy’s first and progressive symptoms. Doing so was rather cathartic. I found it quite therapeutic to read my diary again as well as notes I had scribbled in Jumpy’s red book. It made me realise I had done everything I could as a mum.
Looking back made me realise that we were not sleeping at all. A lot of tears were shed in those bleak months awaiting diagnosis. I also spent a few hours each week with doctors or trying to find out what was wrong with my little girl. It is strange (but good) that you should forget these things the minute the situation is under control.
This morning, when I arrived at the venue (Church House), I was lucky enough to be allowed at the back of the conference hall to listen to Dr Meyer’s talk. She described signs that could not be missed such as diarrhoea, waking up in the middle of the night screaming in pain, refusing food. At times, she used technical terms that made it way too specific to understand, but I could relate to the vast majority of the session she held and kept nodding.
Maureen and I took over after the talks. The purpose of our session was to bring to life some of the information the GPs had just heard from the lecturers. I shared my experience as a parent, focusing on the impact of eczema and allergies on Jumpy and our family as well as the complexities of managing these conditions.
Wriggly was a very well-behaved little baby throughout the whole event. As for me, I thoroughly enjoyed sharing our experience. It was an informative day and I am glad I was part of it.
Before Dr Meyer’s talk, I had not heard of FPIES (Food protein-induced enterocolitis syndrome). I looked into it tonight and Jumpy had all the symptoms when exposed to milk protein. Before milk was excluded from her diet, every time she had dairy, she had a delayed reaction in the form of violent vomiting and diarrhoea.
“There is no allergy test which can confirm a diagnosis of FPIES. Skin tests and blood tests to measure IgE levels do not help, as the reaction is not caused by IgE antibody.” (Allergy UK) When Jumpy had her first skin prick tests a few months ago, I was incredibly happy as she had not reacted to milk. Her recent blood tests were also promising. Now that I know about FPIES, I am aware this could mean the allergy is FPIES rather than IgE and she might not have grown out of the allergy. I now understand why her paediatrician is organising an oral food challenge in hospital rather than suggesting we start introducing dairy products at home. The good news is that according to Allergy UK, “most children outgrow FPIES by the time they are about three to four years of age.”