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My first had confirmed FPIES. He wasn't able to start/tolerate solids until around 14 mo. Carrots were his first safe food. He was EBF until he self weaned at 21 mo and during the time from 8 mo until 21 mo I was only able to go from 3-15 foods and being completely vegan because he could not tolerate any animal products. We did very slow trials, first in my diet then in his, which took a few weeks for each food and then if he had a reaction we had to take a few weeks of gut rest. He started to outgrow it around 2.5 and now eats a completely normal diet at 4.

My second had suspected FPIES but presented differently than my son. She did not have the projectile vomiting but did have the bloody stools like he did. For her I was only able to eat 3 foods for nearly a year. Everything I tried caused bloody stools. We tried solids at 6 mo with one of my safe foods and I lost one of the foods. We found another she could tolerate in my diet, but didn't try solids again until she started sneaking them at 11 mo. At that time she somehow was able to tolerate everything and has been since (19 mo now).

One thing I have learned is there are no "rules" to FPIES. What works for some may not work for another. Anything can potentially be an FPIES trigger so you really need to take trials slow and not rush them, which can be hard when LO wants to eat. Also be sure to reestablish a baseline after fails. The good thing about FPIES is your LO should outgrow it at some point, it's just when and getting through the worst parts that are so tough.

@brownie: Hope you can figure them out!

@catlady: her pedi's list is pretty right on for fpies

@catlady: I'm sorry! I asked for a gi referral because our pedi was clueless - fpies is so new that many don't know about it. I hope things have improved for your LO.

@Mrs. Pinata: with DS our official dx came after trying to start solids with rice cereal. He projectile vomited 2 hrs after, became lethargic and had bloody, mucus filled stools. Classic FPIES. We had been working with a GI since a young age, and know now he was a BM reactor since birth, but after failing rice cereal our local GI sent us to an allergist at a children's hospital who is known for FPIES. He has RAST allergy testing (negative), skin prick testing (SPT, negative) and atopic patch testing (APT, 17 foods with most positive and a few negative on APT turned out to be fails when we trailed) done. We eventually switched to GI there as well (about a year or so later). R/o other things and with RAST and SPT negative (expected in FPIES) and having the classic symptoms they dx him right away. When my second showed similar symptoms (bloody stools) at 1 mo, we sought out the same team that we used with DS at the children's hospital. Since she didn't have the vomiting piece they didn't officially dx her FPIES but said she had "food protein induced something" and it didn't really matter what the name because the treatment, avoiding the food, was the same. She had SPT done, but is sensative to adhesives so we did not do APT.

There are a few things that can help you guide food trials and help you pick foods to try. While not fool proof, since every little one with FPIES is so different, they can be helpful. I will try to link you when I get home. Also check out the FPIES FB groups. They are an invaluable resource and make you feel like your not alone in this small community.

@Mrs. Pinata: Parch testing isn't always accurate so it may not give you the results you are looking for. For DS it was highly accurate and helped guide early food trials but for many others it was a complete bust. Our allergist will not do patch testing without skin testing first to check for IgE allergies (which is more accurate for those compared to patch for non-IgE allergies). Even with all the testing it is still just trial and error.

Here is a link to the FPIES food survey. You can sort of pick foods from here based on others responses and what seems to be a problem for most kids. A mom put this together and there are links to the surgery to both take and view results. http://fpies.bofferding.net/fpies-food-survey.html

Some have also had luck using the food allergen scale (page 4). The items at the top of each column are more common in IgE allergies. The ones at the bottom are thought to be the least likely to be a trigger. http://www.allergynutrition.com/wp-content/uploads/2013/09/Foods-Most-Frequently-Associated-with-Allergy.pdf

I wish my link to the botanical families still worked, but basically if you google botanical families you can use those lists to guide trials too. For some if a child fails one food in a family they would also fail others or the entire botanical family. It can help draw connections and you can see which foods are related to others.

The FPIES Foundation your pedi sent you is a good place to start. They have a support forum on there as well. The International FPIES Association (http://www.fpies.org) is also another good one. They are the ones responsible for getting an ICD-9 code so kids can have a real medical dx of FPIES now. in addition to the FB groups I mentioned (there are a bunch and also ones specific to certain regions) there is also a group on BBC that might be helpful for you too.