Hello,
My name is Alina, I believe my baby has FPIES although she hasn't been diagnosed yet.I read your story and thought you will be so kind to give me a piece of advice.She is 1 year old now still breastfed.From 6 months she began diversification with carrot,potato,apple and when she was 7 months and a half she ate small amounts of chicken for a week and a half without problems.After that began a period when she arrived at emergency 4 times after eating 3 times egg yolk and one time chicken, she had projectile and continuous vomiting 2 hours after feeding and became weak, pale, lethargic and had metabolic acidosis.She had IV fluids and diarrhea started for few days. First time happened first time she ate about a quarter of egg yolk and doctors believed that she provoked the vomit because she had an irritation in her throat; second a week later also with egg yolk they thought it was enterocolitic virus; third time was with chicken this time she haven't had eaten chicken since that one week and a half when she was introduced with chicken when there were very small amounts, this time they hadn't had a diagnostic they said it might be flu. After the third time,after a month we tried to give her a small amount of chicken like a pea and she started vomited the same way but stopped and after another month we tried with egg yolk also like a small pea and we arrived again at emergency and this time although we were sure that it was a kind of allergy and we insisted to make allergy tests the doctors said again its a flu.Every time all the doctors said it can't be from chicken and egg, it's a coincidence and we should try to give her again because she might became anemic if she doesn't eat egg and chicken.
We made the allergy tests for Ige and they were all negative but I thought they will be so because every time the reaction was after two hours and there were no itches and hives.I found by mistake the FPIES diagnostic googleing and I was surprise how well it fit to our story but still I'm not sure until a doctor will confirm.At this time she ears carrot,potato,apple,broccoli,pear,peach,multicereal,some cereal with 15% skimmed milk powder, she ate but not for so long small quantities of yogurt and cheese made from milk. At this time after the last incident I haven't tried even she had eaten before ,I am scared to try after I read she can make the reaction even after a couple of time she eats without issues.
I wanted to ask you some questions if you could be so kind to help me because I am desperate to find a solution:
What doctor should I look for an pediatric allergist or a nutritionist ?
From your point of you my story seems like FPIES ?
How is Wyatt now ? Did you outgrown the situation ? What steps should I follow ? I'm still breastfeeding and I wonder if I'm eating eggs or meat could make her harm? What do you know about vaccination can she have a reaction if egg is a trigger for her ?, she needs to make the 1 year old vaccination, at 6 months she was ok but know she has one more vaccine besides that one.Do you know if there is a list of something I could find with the protein quantities in food?, maybe from the items that she can eat there are others related that couldn't make any harm.
Thank you very much for your help and hope to hear news from you soon because it will mean so much to me I'm in a completely foggy situation.