Kara was diagnosed with food protein induced enterocolitis syndrome (FPIES) in August of 2010. She has had many FPIES reactions and complications that have lead to numerous hospitalizations and specialist appointments. It was a huge sigh of relief to finally have some answers and a diagnosis, however we have to remind ourselves daily that this is a very serious disease and this is only the beginning of the long road we have in front of us.

Sunday, August 22, 2010

Accidents Happen

We've had a busy weekend. Lots of running around, trying to put the house back together after the kitchen remodel, Mommy not feeling well, and too many accidents have happened after doing so well for so long. As of yesterday I was really hoping that her accidental ingestion's were going to lead to nothing because it was "so far, so good".

Friday morning Kara got a hold of Big Sisters chocolate milk. We carried our cereal bowls to the bathroom to rinse out (no kitchen yet!) and got sidetracked after that. Later on, Kara came walking over to me to hand me Brenna's sippy of chocolate milk. She was so excited to have her hands on it! I don't know that she even got any of it but I'm sure she tried it. Needless to say, I was paranoid all day that something would happen, but nothing did.

Dad has been busy with the house remodel and not around much, so wasn't quite sure what we were doing with diet this week. He took her on some errands so I could get some rest and gave her a french fry after a stop at McDonald's. The 16 year old in the drive through window assured him there was no soy in the fries, they are fried in vegetable oil. I showed him when he got home that vegetable oil is soybean oil. I looked online at the ingredients in McDonald's french fries and they also have dairy in the coating so that right there was two strikes but again, we waited for a reaction and nothing happened.

Through all of this, I really started questioning her FPIES. The dietitian is the one that suggested we take Kara 100% off of dairy and it's been over a month since she's had any food with dairy in it. Here she had had two different foods with dairy and one with a good amount of soy and nothing happened. I thought maybe we could go back to foods that have lower amounts of dairy and soy in them, eventually, after we completed our long list of food challenges.

Fast forward to this morning - she was really, really fussy. I got her out of her crib and changed her diaper, not putting her pajama pants back on her, letting her run around in her diaper. Minutes later, I noticed her pulling at her diaper and immediately smelled that nasty, familiar smell. Brian helped me change her, trying to comfort her and hold her hands while I carefully tried to clean her up without hurting her anymore than she already hurt. Her bottom, from just minutes in that diaper, had lots - probably ten or more, open spots that were bleeding already. Prior to this, i had her bottom all cleared up, it was better than it has been in a long time! She was cranky all day - really fussy and really needy. She just wanted to be held for the majority of the day but wasn't really content with anything.

I'm hoping that all it's a delayed reaction to the soy and/or dairy. I did start her on bananas besides her corn products because I wanted something more to put in her diet and I was pretty sure that the bananas were going to be safe. I guess if she doesn't seem to get better in the next few days than we can blame it on the bananas but my instinct is usually pretty good with her.

Oh, and because all things run in threes, when we got home from going out in the boat today, she got a hold of Brenna's cheddar goldfish that I had in a baggie for Brenna as a snack. So, we're not in the clear yet. I had SUCH a handle on things and this weekend we were cursed.

May this week be better. My kitchen is done, I'm hoping my allergies will settle down so I can breath, sleep, not cough or sneeze around the clock, and that we can move forward with the bananas and then hopefully add a vegetable to the mix as well. Oh, and I'm convinced mine IS just allergies so I'm really hoping my kids don't get sick too! :)

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