Is it F-Pies?

My son has had gassiness and bloody diarrhea starting at 2 weeks old, at which time he was exclusively breastfed.  Our pediatrician diagnosed him with a milk and soy protein intolerance, and I eliminated both from my diet and continued breastfeeding.  2 weeks later, the amount of blood continued to increase, so while continuing on the elimination diet and pumping to maintain supply, we put him on nutramigen to be sure that the milk and soy truly was the cause of the bleeding.  The bloody diarhea continued, so we tried neocate.  He continued to have diarrhea, but no more blood.  We resumed breastfeeding with no milk and soy in my diet and by that point the diarrhea continued, but bleeding stopped.  We chalked it up to it taking a lot time to get the milk and soy out of our systems, but every few days, he would seem very fussy and uncomfortable again, and I felt strongly something wasn't right.  He was small and growing slowly, but the doctor assured me this was okay because his growth curve was relatively consistent even though he started on the larger side. 

At about 3 months, he began to have blood in his stools again.  He was still exclusively breastfed and there were no changes in my diet.  We put him back on neocate and were referred to GI at the children's hospital.  GI told us it was likely an anal fissure and he was fine because he seemed happy and was hitting his developmental milestones even though he was only in the 5th percentile for his BMI.  Luckily, he had diarrhea while we were there and we were able to convince the specialist to do a stool sample.  The stool sample showed occult blood and malabsorption.  The gi doctor insisted that I must have still been having milk or soy while breastfeeding and told me us to stick with the neocate.  

After about 2 weeks on neocate, he started to seem more comfortable, though he still was having diarrhea.  We were starting to feel hopeful, but then one day, he woke up very fussy and gassy and it was like we were starting all over again.  The GI doctor told us to try alimentum ready to feed, which caused more problems, and finally, we settled on elecare.  After a few days on elecare, we saw a huge improvement in his temperament and sleep, and a couple of weeks in, his stools started to look normal again.  The nutritionist at the children's hospital told us to start solid foods as normal, but avoid milk and soy, and nothing else.  (Of course, this made me nervous as I knew I wasn't having milk or soy when he started to have bloody diarrhea again.)

Since starting solids about a month ago, he has been fussy off and on and had diarrhea about once a week for a few days at a time.  It's been hard to tell what is causing it because we have only been giving foods for 3 days at a time.  Finally, last week we saw the allergist at the children's hospital who said that he has f-pies.  This was surprising because he has only vomited a handful of times, mostly before the introduction of solids.  He has had some reflux all along also, but nothing major.  She told us to introduce new foods for a week at a time and to avoid milk, soy, rice, eggs, and wheat.  She said she would not want to do a challenge on any of those foods until he is 3.

Does this sound like f-pies to you?  I don't want to take any risks, especially since I think it is pretty unusual and severe to have malabsorption when exclusively breastfeeding, but I also feel like it's a big step to say he has f-pies and that we aren't going to try any of those foods just on a hunch until he is 3 years old.  I'd love to hear other people's thoughts and if anyone is familiar with a case like his.

-Emily

Original Post

We have a similar story. Our older daughter was FPIES to rice. Our son reacted through breast milk and is so much better on elecare. Recent appt at CHOP and feel very comfortable now saying it is FPIES. We did the diarrhea blood thing for a while. On our 6th or 7th food trial we ended up in the ED. And then again for the next trial. I would always prefer to proceed with caution. I’d rather my kiddos learn foods later than go into shock. Good luck on your journey. 

Thank you; did your son have vomiting with the breastmilk or just diarrhea?  I am still hanging on hope that it is something milder than FPIES, but the more I read about other people's experiences, the more likely it seems.  I suppose there is some relief in knowing for sure what is going on and being able to make a plan based on that.

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