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Reply to "How to Explain FPIES?"

Oh my gosh Jill, depending on the audience and circumstances, I purposefully make it sound more dramatic. Early on after G's diagnosis, we decided that we needed to drop our gym membership because we were no longer able to leave G in kidcare. The problem? Ellie's favorite activity and one of the most popular play stations for all the kids is a rice table. Obviously, we couldn't send G there (prior to G being born, Ellie used to come home from there with pockets full of rice!) and needed to explain to the membership staff why we were dropping our membership with reason enough to avoid having to pay the MASSIVE cancellation fee. Yes, I was drastic.

 

That being said, I have almost given up with any more explanation. Partly, I just don't leave her places. Our regular Thursday sitter knows the drill, has kept diapers for me to see, etc. so she got the full on explanation. (Once, despite Ellie's crying insistence that G could have oranges, she still refused because I had not yet updated her that this food trial had been successful!) For anyone who wants to feed her or questions what I feed her, I simply say she's got some serious 'food issues.' If they ask more, I give the ana of the gut type of explanation. If they don't ask for more, I don't offer more. I guess I am exhausted from teaching people some days, tired of the shocked reactions and feeling like a freak show and, to be really honest, don't even want the pity that often follows. Sad, but  true.

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