How do you explain FPIES to strangers?
I'm not the type of Mom to run around proclaiming that Matthew has FPIES. He's such a sweet, smiley kid, and FPIES is just a small part of who Matthew is...so I try to avoid bringing it up. When he was first diagnosed I felt unprepared when someone would ask me about it. From all of my research I knew more about FPIES than some doctors, but when it came to giving a short synopsis...well, let's just say 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 of and just walk away from. Back then I'd get stuck giving too much detail and it would spiral out of control. It made me want to just stay home, or only hang out with my close friends who already knew about FPIES. That way I could avoid the awkwardness all together.
What I really needed was a prepared statement. Not too long, not too short, that would nip the "rice" comment right in the bud. It had to be something that could stand on it's own and be the last part of a conversation, but also allow people to ask more questions. Something I could memorize and say whenever I got stuck in those situations. I wanted to educate the people around me about FPIES, but strangers and acquaintances just needed a blurb. So I asked some fellow FPIES Moms to share how they explain FPIES to strangers. They had really great advice....click here to see their responses to my question.
After a LOT of trial and error, here's what I came up with:
"Matthew has a severe food allergy called FPIES. It's not the typical IgE allergy that causes hives or breathing problems. The cells in his digestive system reject the food. A few hours after eating a food he's allergic to (like rice or peas), he begins to vomit repeatedly." Sometimes I add "He only has six foods that are safe for him to eat right now, and he has to stay away from all grains, legumes, and meats, as well as dairy and soy."
Once you have a plan on how to present your child's condition to the world, it's not so scary getting out there again :) Good luck coming up with your own "blurb!"
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 of and just walk away from. Back then I'd get stuck giving too much detail and it would spiral out of control. It made me want to just stay home, or only hang out with my close friends who already knew about FPIES. That way I could avoid the awkwardness all together.
What I really needed was a prepared statement. Not too long, not too short, that would nip the "rice" comment right in the bud. It had to be something that could stand on it's own and be the last part of a conversation, but also allow people to ask more questions. Something I could memorize and say whenever I got stuck in those situations. I wanted to educate the people around me about FPIES, but strangers and acquaintances just needed a blurb. So I asked some fellow FPIES Moms to share how they explain FPIES to strangers. They had really great advice....click here to see their responses to my question.
After a LOT of trial and error, here's what I came up with:
"Matthew has a severe food allergy called FPIES. It's not the typical IgE allergy that causes hives or breathing problems. The cells in his digestive system reject the food. A few hours after eating a food he's allergic to (like rice or peas), he begins to vomit repeatedly." Sometimes I add "He only has six foods that are safe for him to eat right now, and he has to stay away from all grains, legumes, and meats, as well as dairy and soy."
Once you have a plan on how to present your child's condition to the world, it's not so scary getting out there again :) Good luck coming up with your own "blurb!"
