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.

Monday, September 5, 2011

Another Fail

Tuesday afternoon after work I picked the girls up and headed home. Kara immediately started asking for a ba-ba, which is typical for her. She drank her bottle down and snuggled. Ok, she's tired...had a long day. I can handle that. Shortly after, she started fussing about having a tummy ache again and sure enough, we dealt with tummy problems off and on through the evening. At one point I was going to leave a message with the doctor saying "just kidding! We're having trouble again!" but decided against it. Maybe it was a fluke thing and decided to ride it out for a few days.

We continued on the wheat, beef, apple diet and things progressed through the week. Four a.m. crying out "tummy.aches. tummy.aches." On Thursday I decided to call and leave a message that we are having problems. The nurse called me back and said "PULL WHEAT." and let us know they can see her on Tuesday if needed. I wanted to cry. I had a sinking feeling that we were building towards an intolerance to wheat but was in denial. It's pretty discouraging to keep having food fails now, on foods that for months (or even a year!) we thought were safe. I dont' know where we went wrong - trialing foods too quickly, I'm sure, and then having symptoms build so slowly that we didn't notice a difference until it became tummy aches and icky diapers four, five, sometimes even eight times a day and having so many foods in her diet that we had no clue what was going on.

This week has been difficult. With removing wheat, we added potato. Not sure if we were supposed to do that or not but she needs something to fill her tummy and potato's were originally thought to be safe. Kara is used to eating and was really good about knowing what she could have so this elimination and being nearly two and a half is one of the hardest things we've had to go through. Life is just not fair.

On a more positive note, Kara has been wheat free for three days now and her tummy seems to be improving. She's having occassional tummy aches and was up a few times last night but I'm confindent that it's still from the wheat being in her system and trying not to think that she may be building towards yet another food.

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