Corn FAIL

I don't even know where to begin with this. In my update post the other day, I said we were watching Kara closely because she was beginning to have some symptoms of possibly not tolerating the corn, despite how positive we were that corn would be safe. I'm going to try not to go into too much detail about what events occurred, but this is related to FPIES, and FPIES is far from pretty, so consider yourself warned. :)

Wednesday afternoon Kara was looking pretty pale again. I was home sick, all week with bronchitis and my first thought was that she was catching what I had. Not long after, she was getting really fussy, complaining that her tummy hurt. Within minutes she had pooped, I went to change her diaper and it was (again, sorry, but here goes...) slime. While on Neocate, we had none of these. Perfectly, stinky, diapers, on the verge of being constipated from the elemental formula diet. Shit. Literally, my heart just sunk. I walked the diaper outside to show Brian - many of you understand this! :) His response was to pull the corn. Mine was this: It was ONE episode, I was SO sure that corn was going to be safe. I said I needed to see one more diaper look like this and then I'd be convinced.

We went on with our evening and Kara did ok. She was a little fussy and we ended up being up with her until 11:30. She couldn't get comfortable and had some pretty rotten smelling gas. We got her to sleep, and the night wasn't the greatest, and enough for me to decide that I needed to be home with her on Thursday.

With no other poop symptoms besides that one diaper, we pressed on. Kara had corn pasta for lunch, and snacked on kix through the day. I was continuously asking her if her tummy hurt. "Nope!" was the reply each time. I can't remember the exact details of the rest of the day...I dont' think she had more icky diapers, but things are cloudy and I know I wasn't sure what the heck was going on.

I talked things over with a few of my closest FPIES Moms - we went through ingredient labels, different theories...maybe it was the corn pasta that she can't handle. She'd had it twice but until that point it had only been Kix or Chex. The cereal is probably a lot easier to digest, maybe that would make a difference? We talked about how once we went on the Neocate only diet, her eczema symptoms didn't get any better, and in a way seemed almost worse and how we ruled that out as being food related now. This had me right back to questioning whether or not the Neocate has been causing us problems, since it does have trace amounts of corn in it. Could it be that we were building to a reaction to corn after ALL THIS TIME???

We decided no more corn pasta and at supper she insited on something to eat so we stuck with her cereal. She was all over the place - happy, sad, mad, gassy, obviously not herself. She ended up sleeping in our bed with us so we could hopefully get some sleep.

I dont' know what time we both actually woke up, but it was clear that Kara was having some pain. She was tossing turning, crying out, and was pretty much miserable. She'd have her head on my chest, my stomach, at the end of the bed, making us crazy trying to get comfortable until she finally was able to poop. Brian went to get a diaper and wipes and Kara was a  mess. We got her cleaned up and she was able to rest...for a few more minutes. The next one, we rushed to her room, as Brenna was already in our bed from the chaos of the night so far. We ended up having to do a total bed change and give a 3 a.m. bath. Kara was in so much pain. This went on, we think starting around 1:45. I think we have five diapers from then until 5:30 when we finally all started to rest camped out on the living room floor. Brenna, included. NO MORE CORN.

Yesterday we had symptoms off and on all day. The total was nine blowout, diarrhea diapers in twelve hours. We pulled the corn, and are working on what our next step is going to be. The frustrations are huge...as if we didn't have enough on our plates yesterday, I spent a good part of the day on the phone with Kara's different nurses and had a few conversations with her allergy doctor, trying to figure out what the heck we are supposed to do next. That's a post all in itself. Oh, and for the record, I called Cincinnati both Thursday night and again Friday morning and never received a call back. I'm not sure what to think about that.

The good news is, we were able to keep Kara somewhat hydrated. She doesn't look well but we will be addressing that on Monday, as long as she doesn't have any symptoms of dehydration. More later - for now, it's NAPTIME! :)