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Hi, new to FPIES and looking for some guidance.  My daughter is 8.5 months old.  We started solids around 5.5 mos and up until a few weeks ago hadn't had any issues.  She had been eating oat flour cereal, banana and apple most mornings and sweet potato and squash for lunch.  About 3 weeks ago she had a vomiting reaction (seemingly to sweet potato/squash).  We thought it could a bug and did a few days of breastfeeding only.  Each time we tried to reintroduce with the foods she had been eating (mostly sweet potato, banana or cereal) after days of breastfeeding, she had the same reaction of vomiting about 2 hours after eating.  The reactions progressively got worse with continued vomiting to the point of bringing her to the ER for hydration.  There were four reactions over the course of 2 weeks.  We are trying to figure out food trials, but very confused on the timing given there were months of eating these foods with no issue.  Wanted to ask if anyone had a similar experience where there was no sign of FPIES for the first few months of solids.

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Hi Claire

Sorry to hear about the FPIES diagnosis- but at least you know what it is.  We are on the other end- my son is now 5 years old and FPIES free, so there is light at the end of the tunnel.  : )  A reaction absolutely can happen after months of eating a food.  My son had rice cereal and veggies from 6-7 months before being diagnosed (and in the hostipal with a reaction to squash) at 8 months. Then,  we lost most food at that point.  We had a severe case, so that is where my advice is coming from:

1. Reset the gut with only safe foods (looks like you are already doing that) before starting a new trial after a reaction

2. Breastfeeding was amazing for us until finally we got Neocate Splash at 3 years old (we had a terrible time with refusing/reacting to formula and really any milk)

3. Trials:  We had to do 1-month trials (as my son did not often react after 2 weeks) though would often trace 2 foods at a time.  Go very, very slow. You cannot take a "break" from any food or it can cause a reaction (even if they have successfully eaten it for months).  I kept the 5 or so foods we did have at age 2 in constant rotation (vacation was a big problem).  You also can't let them overfeed in any of the foods for the first 6 months or so or it can trigger a reaction.

4. Know the common triggers- grains, banana, sweet potato/squah, etc. and avoid them until much later.  Please know that all FPIES kiddos are different and even if I suggest foods your daughter still may react to them.  We were successful with baby food (Gerber- pear and apple/blueberry mix mainly), russet potato, quinoa, and avacado at that age.  Fruit cups and beef were OK for a time period (then we lost them). 

5. Watch for soft signs of reaction before the vomiting reaction (though sometimes you'll have no warning) and pull the food- for us it was screaming 2-4 hours after eating, reflux, and/or changes in the stool.

Hope that helps.

-Jessica

Hi Claire,

The severity of the reactions was the worst age 2 and under and then became less severe (with a few exceptions when I didn't catch the offending food in time as it gets worse the more times they eat it). 

Age 2: 5 safe foods, continual loss and gain of foods

Age 4: 20+ safe foods, gained back cow's milk at 4.5 (tested up the dairy ladder)

Age 5: completely outgrew FPIES : )

-Jessica

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