1). Strawberry he ate one, next day had red-rashy cheeks all day. Refused to eat anymore strawberrys. Juiced some one day, coaxed him to take a sip- which he did and then looked at us like we had fed him poison, pushed it away and refused any more. That afternoon he was a complete bear. Enough, he doesn't want them, coaxing him to take some made him miserable. Shelve it.
2). Pork- ate 2 bites, got them down but struggled with the texture, refuses to eat again.
3). Potato- ate only a few nibbles and the following day had significant behavior changes- he has very little enzyme it requires to digest starches so unsure how far we can push this. We're trying again (now) with natural potato chips.
4). Cauliflower- refuses completely
5). Beef- refuses completely (won't even allow the plate to be next to him)?!
6). Pineapple- juiced, 1-2tsp in 6oz. of water and he loves it. No noticeable symptoms on first days! We have continued it and we do see some bloated belly, explosive stools; but feel this is related to his dissacharide deficiency. For now, we will call it a pass! We will rotate it and limit his amounts but feel good that symptoms do not build upon reexposure.
7). Eggs- was enthusatic about, but despite offering in a variety of ways, gets less and less excited about and has building symptoms from less and less nibbles (mostly behavior and sleep). We had been continuing egg all last week, he wasn’t interested in it as much as we had hoped he would be…in the past, for little man, that is a sign that he isn’t feeling well after eating it- symptoms that he can’t communicate to us but maybe include stomach cramps, achiness, mouth/throat itch; all confirmed after about the 8-10th exposure, he wakes up early one morning to fill my kitchen sink with vomit. It wasn't till bile, but it was significant. We don't call anything "FPIES fail" if it isn't to bile/diarrhea/dehydration....would it be so if we continued? Maybe. We're just not going to find out. We'll give it at least a year before we try it again. We're bummed about eggs, we had such high hopes for eggs- and it certainly increased the baking recipes!
8). Coconut - significant behavior symptoms from the flour, maybe it is just the fiber in the flour so I tried oil. I snuck it into one bottle (about 1/4tsp) but the next time I tried to sneak it in he noticed and then refused his bottle. I can't take that chance so tried it another way- coconut ice cream! He doesn't like it! We've tried coconut before- this spring, we got to day 4 with NO symptoms and then day 4 hit and he developed symptoms fast but since they were accompanied with a fever, I knew we had to try again since it could've been something else.
9). Quinoa- made him his "cookies" with quinoa flakes, he tried it one night but won't try it again.
9). What's next on the list? Carrots, kale, try pork again, try beef again, try quinoa again, ???
We need to keep introducing foods, it is helping collecting data for his varied reactions so we can assess if he has something else on top of his FPIES. The behavior symptoms are difficult as they can be from his dissacharide deficiency or his FPIES building. What behavior symptoms do we see that are concerning for FPIES? As the trials progress, he eats less and less but gets further and further away from baseline/ his “normal”- his tantrums increase (and get more irrational, any tiny thing will set him off), he has started hitting (hard!), he throws things (not good!), and he screams! his sleep is disturbed as well, and so is his appetite. He is just not our Little Man, he isn’t like this at baseline, he isn’t like this when we are not trialing foods, what is this beast inside of him? Why can’t food NOURISH him??! I can’t even begin to describe how this feels, to a mom….to not only not be able to nourish him from basic foods, but to have basic nourishing food turn him into this unrecognizable child.