Our secretary and trustee Odette agreed to share her thoughts on living with FPIES in order to help other mums feel less alone and help friends and family members understand what life is like for a parent dealing with FPIES everyday.
We are very grateful to her for sharing.
'I am so fed up of trying to be brave and not moan about Maggie’s condition! I try so hard to not harp on about it, to not have it as the thing that defines Maggie, as its not, but I so want people to understand this vile condition... so other children and parents don’t have to feel so alone! So people might understand severe allergies more! So, I have decided to write about just one day managing FPIES...
I tried a new baby group today, a lovely group in a small village hall...we were so pleased to have found a group age appropriate and full of great toys! Half an hour later I felt stressed and alone, unable to tell anyone why I was fighting back tears, why I wanted to run out of the hall with my daughter and why I was walking around picking up food that was everywhere!
Someone lovely had baked homemade cakes for the children, which they loved! The children were all walking around eating the cakes and why shouldn’t they? It’s a lovely experience for them...but for me and Maggie, it was a nightmare. Cakes containing dairy and eggs (both of which have caused reactions leading to hospital for Maggie) were everywhere, on the floor, the slide, on toys...everywhere!!!
How do you make a 15 month old baby understand that if they eat the yummy looking lump of cake off the floor, they will be so ill that they will be in hospital?? So instead I followed Maggie around picking up every crumb, looking like a nutter! Then, mummies were giving their children healthy snacks of banana, (something Maggie is also very allergic to) again, why shouldn’t they give their children healthy snacks ...its food after all, how could they possibly understand how the whole experience was making me feel sick with worry and panic over Maggie eating all of this unsafe food...its food for goodness sake...how could they understand that if she ate it she would be in hospital...I wouldn’t have understood before I had a child with FPIES.
I could have tried to explain, but then you seem like this worrying parent, possibly over exaggerating ‘intolerance’ (when all you want to shout is ‘it’s not a bloody intolerance, it’s an allergy like no other! It’s a violent reaction which makes my baby so ill that her body shuts down, she goes into shock, looks like every bit of life has been drained from her...not some intolerance that makes her tummy a bit sore!!) I wanted to say, how would you feel if there were little bits of poison all over the floor that would put your baby in hospital... how would you cope letting your baby toddle around in between them...but how could I, because they would never understand, because its food! Because they are feeding their children and why shouldn’t they? Why should they try and understand about a condition that you can’t see, that you can’t understand...especially when thankfully my daughter looks beautiful and healthy.
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