Confused about possible FPIES and trigger foods - HELP

Hi,

I find food trialing very stressful and difficult as well!  I do not have a clear answer for you, but I can only offer my experience if that helps:

My son had rice cereal an entire month before his first FPIES reaction to it.  A mother on the facebook page said that her daughter had oatmeal 50-60 times before her FPIES reaction.  So, yes, there can be a lengthy delay before the first reaction.  Sometimes without warning . . .

As far as the time delay, my son almost always reacts 2 hours later if it was a solid food.  "Milk" trials can be much tricker for us- he sometimes can have a delayed reaction up to 6 hours later. 

The more I read the more I find that each FPIES case is different and unique.  We just have to navigate the best we can and trust our instincts.    

-Jess

Hi. I had a very similar situation with my daughter at the same age. However our 1st trigger was cow diary formula. I find its difficult to pin point a trigger food without trialling it on its own. It seems trigger foods for FPIES childen can be very different. For my daughter its cow diary, rice and egg. However we find we have stomach cramping and diahorea with any new food introduced. My only suggestion would be to try a meat or vegetable - chicken or sweet potato maybe? Something gentle on her stomach and see how that goes. My daughter is 1.5 years old now and is starting to cope much better with new foods. It will hopefully be the same for you. But right now I understand your concern and apprehension. Its hard. Hang in there and good luck. 

Your story sounds similar to ours. Between 5 and 6 months, my daughter started having FPIES reactions to oatmeal. We took her in to the ER after profuse vomiting followed by lethargy. She went into a decomensated shock state both times she had a reaction and both times we were told that she had a virus- hospital staff basically told us, "sorry about her luck- she's caught a virus again". I was pretty upset, especially after the second time of a decomensated shock presentation that staff didn't seem to want to explore other possibilities further. At that point, I knew nothing about FPIES but pushed for us to see a GI specialist at another leading hospital- we got the FPIES diagnosis immediately. Once we were being seen regularly by GI and a nutritionist, we developed a plan for introducing foods. My daughter is 20 months old now and has quite a list of foods she can eat and tolerate! She's been breastfed since she was born, so I cut all trigger foods out of my diet and also cut out 'question' foods from my diet as well. Hope you can get some answers soon! We walked a pretty dark path for a while with this- I'm happy to share our experience so far with it. 

Hi there,

The delayed reaction after many introductions was identical to how ours reacted. Our first had it mixed with avocado. The second kiddo lucked out and we knew better than to mix foods since he'd had stomach issues even while breastfed. Turned out he had fpies to oats, too. 

I would suggest seeing a specialist and making sure you get a food introduction plan. Our allergist had me cut solids completely for them both for a month as they were breastfed and super chunky. So from 7-8 months both just had breastmilk. Funny enough those are their chunkiest baby photos! I worked full time so it was lots of extra pumping but so worth it for the peace of mind. 

Cut oatmeal and all oats (so many hidden forms in breads and crackers and even yogurt) from your diet and if it's your little ones only trigger you may be amazed at how quickly their tummy trouble subsides. After we cut oatmeal, we really slowly introduced new foods. We started with berries and fruits since those aren't super common first foods and were lower reactions than others on the google spreadsheet that's floating around . Also, our allergist told us try to wait on the major fpies trigger foods until their gut is more developed. As a disclaimer, he said the research on fpies is still really new and not clear but it appears fpies families should do the opposite of new food allergy guidelines which say to introduce as early as possible.  By a year our kids only had a handful of foods because we wanted to be sure they were safe. But by 17/18 months they were eating almost like other kids at their centers who don't have allergies with no other triggers! Now our eldest had outgrown oats and our youngest didn't react when a small amount was accidentally ingested.

Another thing we did was use mostly baby led weaning to introduce new foods so they didn't get so much of a food at once. We learned from our allergist that sometimes the amount of the offending food matters. After a food seemed safe then if they needed bulkier amounts of solids we would buy them as puréed food or puree it ourselves. I also heavily trailed big trigger foods in my diet first while we had stopped solids for them. So I did a rice week, a dairy week, a wheat week and a soy week. This helped us feel better about those foods. The allergist suggested three or more servings of that food each day and  then to watch for soft signs for up to a week. 

Finally, I found it really hard to take the pressure to "feed" my baby "real food" hard to ignore. Even family trying to be helpful would comment about him nursing so much or asking every minute during a family meal if he wanted something to eat. Our youngest is 17 months now, just weaned this week, and eating almost anything we put in front of him. We still haven't tried rice, avocado, or soy and we have avoided watermelon since he's had three soft reactions (irritable, gassy, and gross diapers). We will introduce these foods later but have found them easy enough to avoid. Good luck to you and your little one! 

Short answer assumption for you:

- some FPIES people take a long time to exhibit signs just as some people have extrodinarily bad reactions to different foods for the same person. . . There's no rhyme or reason but you'll figure the variances out in time.

- the oatmeal was the reaction trigger, the peaches (fruit) just stimulated & expedited the process(think of Mexican food for some people).  The endurance variances and nutrition stimulants/suppressant is why food training is critical to identify what does what.

Fingers crossed for you. . . 

Thanks everyone!  This is so helpful.  I do think oatmeal is the likely trigger, and we've stopped all solids for now until my daughter goes back to the GI in a couple of weeks (we're trying to get an appointment sooner).  Luckily, things have gone back to normal since then, so it looks like her reaction is acute only to solids she ingests herself (I still eat oatmeal/cheerios with no issues).  Hoping to get some answers and advice from the doctor on introducing foods...

KSpencer, we are having a very similar experience right now with our 7 month old.  Have you had any progress?  Right now, we are waiting to see an allergist in a couple weeks but in the meantime are not giving our daughter any solids because both oatmeal & apples have made her vomit multiples times.