my DD is 17 months old and has finally been diagnosised officially with Fpies. I have suspected this was our issue for many months, but just now have a true confirmation from an allergist. When my DD was born she projectile vomited 10-16 times a day, ate BM constantly, had a huge belly, and had pure liquid burnt orange stools. Our pediatricians all said this was normal! As aNICU nurse I knew it was not so I consults journals, peers and the internet and discovered milk intolerances. My pediatrician finally took interest when she was having bad bloody and mucous stools. I went completely dairy free and that solved so many of our problems. But eventually I had to remove Soy as well and our gastroenterology dr said she had MSPI.
Once the soy and dairy were out of my diet she was a completely different baby! But I noticed that foods that were supposedly dairy free still caused a reaction, she was probably 4 months old at this point. So I went to the allergist fearing we had more issues. This allergist diagnosed FPIEs but then called me at home that night to say my child was too healthy and growing too well to have FPIES. I was pretty much told that I just wasn't watching dairy labels well enough and I was ingesting it so I should stop breastfeeding and switch to formula so that I stop making it worse for her.
I chose not to do so, and kept a very strict diet with no processed foods and my LL thrived! We ran out of Bm at 14 months when I went back to work, and our issues really reoccurred. I learned quickly we did not just have MSPI, and feared it truly was FPIEs. My DD has reacted to Dairy, Soy, Peas, and to a milder degree rice and oats. We have avoided dairy and soy but know that issue is still active bc of an accidental introduction at daycare. The other foods were discovered from repeated introduction and eventual breakdown of her system. Pea protein in coconut and almond milk took 10 days for a visceral reaction but she had been having mild symptoms from the beginning I just wasn't as educated as I am now to have caught them. She was given whole peas recently by my mother and she projectiled within 2 hours and her gut has been torn up for weeks since this event and now it seems like everything is causing a problem.
How do I trial foods like legumes that she was eating so well? She is so hungry and doesn't understand why I won't let her have anything other than a few fruits, pouches of puréed, and eggs. We just started elecare jr and just that alone has made a huge difference. Her eczema is almost gone. But I'm scared to try any foods, bc her recent reaction over the weekend was so severe and we don't know what she ate that completely caused it. I think it was wheat/barley but I can't be sure. I don't want to go back to the ER and there is not a GI near us we are waiting to get into one that is 150 miles away and has a really long waiting list. Is there a place to go to see if your child reacts to oats that most FPIES children who react to that also reaction to x? Or is all of this as it seems, just a stab in the dark till you know for sure your child is ok with that food? I also feel like eggs are fine, but should I take them away and then reintroduce? And what do all of you do for nutrition when you do take away a major source of food? White potatoes never seemed to cause issues, but since I am thinking of removing eggs to test a reaction, I know I can't add anything else in, but I hate how hungry she is and I feel terrible not feeding her. How do you handle the guilt in the moment, but still deal with the reality that it may not be safe to give something to her even when you thought it used to be ok?
Also many people say there children grew out of these issues as early as 18months, are people just continually retrialing previous trigger foods at specific intervals and that's how they knew they were cleared of problems?
Thank you all all for reading my story and potentially helping me navigate these new and difficult waters. I just want to do whatever she needs and cause the least amount of GI damage along the way. Thank you