FPIES – Food Protein-Induced Enterocolitis Syndrome

Last night my daughter started acting odd. She is generally a very happy baby girl and the only time she gets fussy is when she needs a nap. So I decided to lay her down to see if maybe she was tired. With in 10 minutes she was screaming in her room, so I went in and picked her up. She had a wet spot on her bed, so I assumed it was from crying, shes big on the tears when she does cry.

So I brought her into the kitchen where my husband was and handed her off to him so I could make her a bottle. I was thinking, “maybe she is thirsty again?” And I turned around an picked up a bottle near the sink, then I heard something. So I turned around and my husband was covered in vomit. It was on his face, his shirt, his pants, the floor… and the baby was screaming. I grabbed her up and tried to think – what could she have eaten to make her throw up?

This is my baby and I laying on the couch. She I have the towel and blanket just incase, and this is after we took the zofran. So she was not actively getting sick. But she still felt bad.

She’s got FPIES – and the only thing I can think of is a few hours earlier she was holding a tablespoon that was used to measure my son’s cream of wheat. It didn’t look like it had much wheat dust on it but she did have it in her mouth. I thought nothing of it because it was such a small amount. She reacts to wheat, oats, rice, broccoli. pineapple and corn with her FPIES. So the only think that this could be is the cream of wheat…the very small amount of dust that was left on the spoon made her vomit.

This food allergy is just so infuriating. Lillian is getting to the age where she will grab things from me, or find things that she couldn’t grab when she was a tiny baby. So now I need to make sure this toddler doesn’t introduce foods we all eat, but that she is allergic to. I wrote about FPIES in an earlier post, we are very careful with her foods, we read EVERY ingredient, we make sure if we introduce a new food to her that we watch for a reaction. Yesterday I just didn’t think that the spoon had anything on it – especially not enough to make her sick but that shows how sensitive this food allergy is.

Thankfully I had some zofran on hand from a previous visit with the doctor, when they prescribed it to her for vomiting for this exact reason. Just to have around just in case she gets food she is allergic to. She threw up again on me a few minutes later, and then I remembered we had the zofran. We gave it to her and she stopped throwing up (these vomiting sessions can last over an hour usually, but this stopped it after 10 minutes). We then spent the evening laying on the couch and she only had pedialyte after that so that she could get some tummy rest.

Her reaction usually goes like this: Vomiting 2 hours after exposure to the allergen. She generally vomits for 1 to 2 hours, emptying her stomach. Later she generally has fever like symptoms, she feels warm and looks ill. Her face usually goes very pale and then she generally gets diarrhea all the next day.

So far we had the two vomiting sessions and she started to feel warm. But the zofran helped us minimize the other symptoms thankfully. FPIES is still considered a rare food allergy but a lot of babies have it. I belong to an online facebook group for support and a lot of times doctors just misdiagnose this food allergy because the babies don’t get hives or have anaphylactic shock. But having a baby vomit for hours and then have diarrhea is not safe either. With some foods her reaction is more severe. We are lucky this was a wheat exposure and not a pineapple one. Pineapple was a horrible reaction, probably our worst.

Visit the FPIES FOUNDATION for more information

If you have a baby with this food allergy, know that you are not alone. There are groups and other families going through the same thing. Yes it is frustrating when your doctors don’t know what FPIES is …but its real.


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