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.

Wednesday, August 11, 2010

What Do We Do?

I'm at a loss as to what to do with Kara. I'm going to call the GI doctor tomorrow. At this point, nothing is working and it's so tough to just NOT feed her the food that she wants. She knows she's missing out and she's miserable. It's heart breaking having to sneak bites of food around her because if she catches you eating, she'll want some too. It's heart breaking to have to tell your three year old she can't have something because Kara can't have it. It's heart breaking having your baby cry and cry and not be able to soothe her even though you know what's wrong.

We went to carrots today because I was almost positive those were going to be a safe food after doing 4(?) 5(?) days of apples and not having a definite yes or no. She had a horrible, horrible diaper tonight. As some know, we are in the process of gutting our kitchen, so I had the girls upstairs playing. Brenna came downstairs and said "Mom, Kara's really fussy and wiggling her butt. I think she pooped." I knew what this meant so I ran upstairs, grabbed her and yelled for Brian to meet me to help out. I laid her down and she was already screaming. I cleaned her up as he held her hands and tried to comfort her. Her butt was so raw it was bleeding. It happened that fast. This diaper also had undigested food in it, again - this is a problem I've been noticing more and more lately and I'm not sure what to think about it. They were steamed carrots, it's not like it was corn, or anything raw!

She was so fussy, pretty much from the time I got her home from daycare. She just cried and cried. I was trying to pack bags up for us to move to the in-laws for a few days since our house is a disaster area right now but Kara wasn't allowing that. I tried to rock her, she cried, I tried to feed her some plain barley with Neocate and she cried, it didn't seem to matter what I did. I finally left, figuring I'd run home later and get what I needed. We gave the girls baths tonight and Kara was so excited to have her bath at Grandma's house. I stood her up in the tub, waiting for her to sit down. She cautiously did and she slowly sat down but the minute her little butt hit the water it was instant tears. She kept trying but you could tell that it was so painful. I just want to cry right along with her as she's going through all of this.

At this point I don't know if this is FPIES or if she has something else going on in her digestive system. Hopefully the GI Dr has some sort of answer for us, or will want us back down there to do some more testing. I sent in her occult blood test yesterday, they'll test it tomorrow and then I suppose we'll wait for the Dr to get back to us with the results. I'm not sure what the heck else to do.

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