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Re: How to Explain FPIES?

Mommy to Thomas ·
One of the websites I've read about FPIES calls it "anaphalaxis of the gut." So when I've explained it to people, it's like a reaction that some people have to peanuts, except instead of their airway closing, getting hives, and their breathing going crazy, everything happens in the GI tract. It's worked for some people. And depending on how interested they are on what happens to my son, I tactfully try to say it's not a pretty sight because it makes him violently sick "on both ends, if you...
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Re: How to Explain FPIES?

music_rxmama ·
I know exactly what you mean, Amanda!!! I struggled with this for a long time as well and I still struggle from time to time but here is what I found helpful. I consider my audience. Is this someone who is asking because they really want to learn more and want to really know how to help my child or is it someone I am telling so that my child is protected? Is it someone I am having a casual conversation with (maybe they asked why your LO isn't eating food X like their little Joey, etc)? Then...
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Re: How to Explain FPIES?

My Little Man ·
I saw it is a severe food allergy of the gut- ana of the gut (as previous poster said)...and then I consider the audience too...many people are familiar with how sensitive a person with celiac disease is to gluten- I say it is like that but to more than wheat. Also, I remember what Janice Vickerstaff Joneja said about how she, in the 70's- with her child having multiple IgE allergies that were NOT YET DEFINED related to FOOD approached it...she actually worked WITH the man who patented IgE...
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Re: How to Explain FPIES?

Jill ·
Yeah, I basically just say it's a severe food allergy of the gut. If they ask more questions or appear to want to know more, I get into a few more details about the type of reactions. I mostly leave it at that. If people ask more questions, I give more info though!
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Re: How to Explain FPIES?

EllieBelly ·
Boy can I relate to this. It is irritating when you say 'allergy' and then they make it seem like no big deal, right? I decided early on that I would use that to my advantage, and yes, consider my audience, but sometimes have a little fun. I mean if they really dont care to know what FPIES is and are not going to remember anyways, then who cares? Sometimes I say things like "She has a severe immune system disease"...and then wait for their concerned look to say "Dont worry she isnt...
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Re: How to Explain FPIES?

Jill ·
Haha!! Yeah I have to admit, when we first told our families, we MAY have made it been a little bit drastic. I wanted to get my point across though...NO feeding her unless MY HUBBY AND I say it is ok. I told them about the ER letter and that we were directed to immediately go to the ER if she starts to vomit and daycare was instructed to just immediately call an ambulance. Those are direct orders from our allergist, but we told daycare to call us instead of ambulance and we actually haven't...
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Re: How to Explain FPIES?

Jamie ·
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...
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Re: How to Explain FPIES?

Jill ·
Yeah, no one watches Brynn either. My parents, Danny's parents, and our daycare. I can not say enough good things about our daycare. She has saved diapers as well, sent me pics of them, is working with me on a rotation diet....AND the big thing is that I TRUST her to make Brynn's food. I don't even send meals with. If it is something that the food program she uses will buy, she gets them (like fruit and potatoes). I am working on getting her all the coconut products so she can use them to...
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Re: How to Explain FPIES?

Jamie ·
Jill, sounds like you truly have the best daycare provider EVER. She's done more than anyone in my family has ever done! Wow!
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How to Explain FPIES?

AmandaB ·
I don't like to run around proclaiming to the world that Matthew has FPIES, but there have been a few times recently when I needed to explain it, and I TOTALLY botched it.   What's too much detail?  What's too little?  And maybe...
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