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.

Tuesday, August 9, 2011

Follow Ups

Kara seems to be doing much better now, with the exception of the "normal" icky tummy aches and diapers that she's been having. Despite MANY annoyances with the U of M as far as getting a follow up appointment made, I think we might be getting somewhere. The soonest I could get her in for a hospital follow up with her GI doctor was six weeks away. This was after many phone calls and a few pages to the GI nurse where I explained that we were transferred to the U for continued care because the physicians here didn't know what else to do with her. I'm still irritated with this because they treated her down there for gastroenteritis and sent us home - come back in the middle of September! :) (They could have done this at home instead of having us drive 2 1/2 hours at 1:30 in the morning. A few days later, Kara's GI doctor called me and settled me down a little bit about this (I was fuming, good thing I didn't blog about this during the process!!!) and explained that after talking with another physician at the U that they decided that Kara should see a new Allergist/Immunologist. I asked about scoping Kara again, thinking that it might be necessary because we still have no answers to why she is in daily pain and why her food keeps running right through her and she explained how she wanted to wait until the Immunology Consult and go from there. Still no appointment was made and it was explained to call her (extremely non-helpful) nurse to get her in. Whatever. My frustrations were way too high to continue worrying about this. I like to be in control and this was clearly not the case here! So, I decided to sit and wait. Things ended up working out - I got Kara in to see the new immunologist yesterday, a week later, and we saw her primary doctor today. We spent the weekend with family near the cities where Kara played and got lots of special attention. Sunday we travelled a little further south and visited with another FPIES family and that afternoon we took Kara to the MN Zoo where she had a blast with the undivided attention she got from my cousin and her boyfriend who came with us. Kara also got to have treats there - cotton candy and a frozen lemonade drink! She was loving it! It was a nice change to have some fun before appointments instead of making the long trip all in one day.

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