u/distressednotea

My daughter (11 months) had an FPIES reaction on Sunday. At least I think she did, but I’m not sure what triggered her. She only ate foods that she has been eating without issue for months. At any rate, she is now refusing pretty much all solids except a brand of puffs that she loves. I’m so worried. Is this normal, and how long should I expect it to go on? I get that her stomach may still be upset, and she might need a few days. That’s fine. I’m more concerned that she’s now afraid to eat.

Mentally, I’m finding this all really hard. We were coping OK when her suspected FPIES triggers were just eggs and dairy - I avoided them, and she was doing so well with solids. It took her several months to get the hang of eating, but she had started to really love her food. On the day that she threw up, she ate oats (Cheerios) and stuff with soy and pea protein as ingredients. So now I’m scared to give her any of those things. I don’t know what made her react. I don’t know what well-tolerated food is going to become a trigger for her. And if she refuses food every time she throws up, how are we supposed to trial anything? That’s a big setback.

I’m speaking to her allergist on Monday. But when we met her in-office for the first time, she told me FPIES is “really no big deal” compared to an anaphylactic allergy. I understand what she meant, but this feels like a big deal. The uncertainty of it all - what did she react to? What food is going to become a problem after months of being ok? When will she eat again - is so brutal.

She’s almost 11 months old and was diagnosed with suspected FPIES at nine months. Per our allergist’s guidance, we’ve been working our way through food trials to rule out possible triggers. I haven’t summoned the courage to test eggs and dairy, which I think are the most likely triggers, but everything else has been fine.

I could tell something was off with my baby today because she didn’t want to eat her dinner. Then at 6:30 PM, she threw up. Half an hour later she puked again, a lot, and now I’m waiting to see what happens. She seems completely fine between episodes.

The last thing she had eaten before these events, aside from breastmilk, was Cheerios. She has had them a bunch of times before and has eaten oats many times, in various forms, without vomiting. Is it possible that a well-tolerated food could suddenly become a trigger??

The only new thing she had today was vegan butter on her toast, which contains soy (eaten many times) and pea protein (she’s had peas a few times, including last night). Maybe it’s the pea protein? But she had that at 8 AM and didn’t start vomiting until more than ten hours later.

I suppose it’s possible she has a GI bug but she’s not acting sick.

I have Zofran for her - would it be reasonable to administer it if she throws up again, even if I’m not totally sure we’re dealing with an FPIES reaction?

Sorry for the many questions. I’m new to this and I hate it.

My daughter is ten months old and has suspected FPIES. A few months ago, she had three episodes of profuse vomiting two hours after her meals. We saw an allergist, went through everything she had eaten during those meals, and came up with a plan to reintroduce all of the foods in small amounts - starting with the foods that the allergist believed were least likely to be triggers. I was instructed to leave dairy for last and wait until a follow-up appointment to reintroduce eggs, as the allergist thinks these are most likely my baby’s triggers.

I have reintroduced all of the foods on the “likely not an issue” list, and my daughter has thankfully been fine. But I’m finding it hard to give her dairy again because I really do think it causes her to vomit. But we can’t know for sure until she eats it again. I don’t want to hold her back or create an allergy by unnecessarily withholding food. It’s just so scary to see her throw up like that. Any tips on how I can brace myself and just go for it?