The Day I met Dr Adam Fox, Dr Carsten Flohr & Dr Rosan Meyer

Church House

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.”

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Comments

  1. What a fab post and a great opportunity – well done and Go Mel! x

    • It really was a great day. I feel I understand my daughter’s conditions better now and I have just started reading a new book about allergies.

  2. I think there should be more of these opportunities for parents to share their experiences like this. It’s invaluable. How fantastic that you had the opportunity and took it 🙂

    • It really was a fantastic opportunity. Talking about what you are passionate about is easy. No apprehension whatsoever was involved, only excitement.

  3. This sounds like such a great thing to be involved in, and I can imagine how passionately and articulately you’d have talked about all that you went through. A good idea to get parents involved like this, too. Well done, Mel! Thanks for sharing with #WotW

    • It was an enjoyable experience. I also found out about different types of allergies and therefore could understand my little one’s treatment a bit better. Feeling informed really helps.

    • Thanks, Jocelyn! I think a ‘live’ case study was a fantastic idea to close the masterclass and I am really glad I was invited to speak.

  4. What a fantastic opportunity for you to share your side of the journey to diagnosis. Im sure it was helpful to all involved

  5. Alexandra Mercer (Life of mummy) says:

    That is something I could never have done, you are very brave. It wouldn’t have made a difference to me whether I was talking in front of doctors or not, a lot of my relatives are doctors, just talking in front of a group of people, whatever their profession, would be far too much for me. I’m glad you’ve helped others and at the same time gained greater understanding of allergies yourself. x

    • Public speaking is actually something I enjoy, as long as the people in front of me do not expect me to say something funny! When the subject matter is so close to your heart, there is no ‘fear’ factor or risk of running out of things to say. I loved every minute of that day.

      • I think that knowing the subject on a personal level helps. But I agree with Alexandra.. I can never speak in front of so many people esp when they are experts! Well done you =) #wotw

        • I did wonder whether I was using the correct technical terms at times, but no one corrected me, so I am sure I did not say anything outrageous! It was fun, really.

  6. Wow well done you. Public speaking is definitely a tough one for me! I’ve just goggled FPIES too and what a tough time you must have had going through that with your child. A good topic to blog about to hopefully help others notice the symptoms #WotW

    • Definitely! I wish I had known about FPIES before. Not that it would have made a difference. It is just that you feel so much more prepared to deal with allergies / medical conditions when you are informed.

  7. well done! very timely!!! We need more voices like yours! no one knows the hardship of allergies unless you go through it!!

    • Thanks, Susan. I was so naïve about allergies before Jumpy was diagnosed. I am reading more and more about it all and it is rather fascinating I have to say.

  8. What a great opportunity to share your experience. Well done! I hope it was well received.

  9. Wow how what a wonderful event to be a part of, I’m so pleased that you got so much out of it lovely. Also thrilled that Jumpy didn’t react to milk last time, and fingers crossed she is growing out of her allergies. What a journey! xxx

    • I was really looking forward to that day, and was not disappointed. As for the milk challenge, we are still waiting for a date to be set. The referral might take some time. I know I am being impatient, but the prick test to which she did not react took place five months ago!

  10. It’s so amazing that you had the opportunity to do this and get to understand it all so much better. Thanks for sharing this important post, I feel like I’ve learnt from it too! xx

    #Sharewithme

    • Thanks Heledd! I am glad you found it informative. I am currently reading a book on food allergies by Tanya Wright. It is fascinating.

  11. So great you got to speak out to so many and were comfortable about it. It’s always great to share your stories and gain more insight on allergy. Its such an unkown for so many different ones. I know I have really struggled in the past learning how to manage it and what to be aware of. But I can’t imagine how much you have had to learn and deal with either. Great post. Thanks for linking up to Share With Me #sharewithme

    • It really is a steep learning curve, isn’t it? I am reading a really good book on allergies at the moment and have just finished another one about feeding children with allergies. Let me know if you want the details. x

  12. Wow! That must have been so interesting. I’ve always been fascinated by allergies as Hubs suffered really badly with asthma and other allergies when he was younger. His dad (a doctor) studied allergies at one point too.

    • I can recommend a couple of books if you are interested, but that might be pushing it a bit! Just let me know. x

Thanks for taking the time to write a little message. Comments always make me smile! x Mel