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Hi, I'm new to the site but I am pretty convinced my 9month old has Fpies. Her first episode was at 5 months with rice cereal. I gave her a table spoon and then 4 hours later she began throwing up every 10 mins for an hour! She was very lethargic and pale! I was so scared and after I did some research this was the first thing I came across with her symptoms. Her second episode was with peach cobbler, not realizing it contained rice flour. I now avoid all rice products. Yesterday was her 3rd episode and it was with oatmeal as I was instructed to try by her ped. I called him & asked about Fpies but he said it was not that because she did not have blood in her stools, but most research does not say much about that symptom. Any suggestions on what steps I should take next because I'm am almost sure she has it. Her ped wants me to try meats but I'm terrified!
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I think you need to ask for a referral to a pediatric allergist or GI, and you should try to find someone listed on the provider list on this site. If you can't find someone nearby who has heard of FPIES, bring a copy of the description from this site to your pediatrician, and ask that he please read it to help you allay your fears. We have had a lot of problems with doctors getting irritated that we were self-diagnosing, and they usually said something incorrect like FPIES is only to milk or that he must have autism if he was starting to refuse foods -- but when we kept at it and went to an allergist and GI listed on this site, we got the diagnosis with no problem. It sure sounds like FPIES, and there are a lot of variations in range and severity of symptoms judging by the forum descriptions here. Our allergist, by the way, thinks my son has FPIES to rice, but that his other reactions are better described as "multiple food protein intolerance/MFPI" partly because he sometimes has bloody stools and reflux without vomiting - kind of the opposite of yours. She said the vomiting part was classic FPIES. Best of luck to you. Remember that you are the expert on your own child.

Love that advice. I have 2 sons w/ FPIES & multiple food intolerances. They can't even touch food surfaces w/O getting some kind of reaction.  Went to several specialists  & no diagnosis. They all look at you like you have 2 heads. Stick with it & your instincts. Keep a food diary.  & remember drs learn from past experiences & books. It now seems that FPIES is just becoming more known.  Good luck!

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