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 it's just me and I need to get over it, but it's annoying when people hear "food allergy" and automatically think they know the ins and outs of FPIES.  Because FPIES is WAY different than most allergies.  I have to stand there and politely listen as they tell me about the person they know who has a food allergy too, and that rice was a great alternative for them.  RICE!!!  When they say rice I feel like I just get trapped because it's the one thing I can't let go and just walk away from.  And then I'm stuck giving too much detail and it spirals out of control.

 

I think I need a prepared statement.  Not too long, not too short, that nips the "rice" comment right in the bud.  I'm serious - I'll memorize it and give it whenever I get stuck in these situations.  I want to educate the people around me about FPIES, but strangers and acquaintances just need a blurb.  What do you say when you're in these situations?

Original Post

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 know what I mean."

 

I hope that helps a little.

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 I use different responses for different people.

 

If I need a short response for someone that might be around my LO when she is eating (maybe a play group mom we see every week, or a non-close family member?), I generally say that my daughter has FPIES, a food allergy, and reacts to multiple foods (if it is someone that is going to be in a care-taking role, I focus on her safe foods and not as much on her triggers since we still have quite a few unknowns) and that her reactions can be complex due to them being delayed from the time she actually ate the food, due to the fact that she has gone into shock from reactions before and could require ER room care, and due to the fact that a reaction can occur from trace amounts of a food (like a contaminated pan).

 

If it is a casual conversation, I say that she has FPIES, which for her means multiple severe food allergies that cause delayed reactions. If it is necessary to qualify severity, I say that the delayed reactions can lead to shock and have previously.

 

If it is someone who is really looking for more in depth information, I give them a little bit more of the background but kind of translate things into "everyday" language. I give a lot of examples; for instance if I am telling someone how it is different from "typical" IgEs, I say "If I gave her a bowl of rice right now, you are not likely going to see hives, swelling, or any kind of more immediate reaction. She will appear fine. But 2 or more hours later, she will become very sick with projectile vomiting (describe symptoms further here if needed) and might need to visit the ER." I go into more detail based on what they are interested in learning about--- some people want to know why a test can't tell us what foods are safe, what the deal is with outgrowing her triggers (wouldn't we all love more answers to this one!!!!!), etc. And I just go from there. When I do get into a more lengthy conversation than I am comfortable with, I try to end things by saying something like "You know, I know she has a lot of restrictions and it can be difficult dealing with FPIES, but she still just picks her nose one finger at a time" And then I say something about B's non FPIES attributes/interests. I worry about the lengthy conversations making people feel like B is defined by her FPIES or that it makes her an anomaly. I want people to respect us and help to keep her safe, but I also want them to realize that this is just a part of her and that I do not want it to exclusively define her. Also, little people have big ears, and since B is my partner in crime and typically by my side, I try to temper things for her.

 

Not sure if this helps, but I hope it gets you thinking more of what will work best for you guys. I know I always like hearing what others do so that I can get thinking about what to do to best fit my kiddo.

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 RAST testing and struggled finding people to trust her that the foods were causing his symptoms.  So strange huh?   Anyway- point is, we may have to just suffer through this and keep educating people one at a time...

 

A good quick line would be to tell them- www.thefpiesfoundation.org has some great info! (we're building info everyday!)  My blog has a YouTube video (no reactions just pictures) and that is linked there and it may help too....

 

Saw your website last night- you did great!! I LOVE it!

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! 

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 contagious."  Or just starting with "She is allergic to all food" usually gets some fun reactions.  Kind of hard to blow off those.  Hehe. OK OK.....people who knows us get the true education on FPIES.  But those random strangers that try to feed my kid?  They get the other responses.

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 had a severe severe reaction since the rice cereal. We have had some bad ones, but not the lethargy and shock symptoms. 

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.

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 create some yummy recipes for her (or use the recipes I have given her).  Have I mentioned that I LOVE her??   =) 

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