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, July 28, 2010


Kara seemed to snap back to her regular self about as quickly as things started so by yesterday morning she was completely over "it". Whatever "it" was that got to her in the first place, we may never know.

She has her follow up appointment with the allergist tomorrow afternoon and I'm SOOO anxious for this appointment. I feel crazy for being so anxious about it. It's going to be a long morning at work and a long drive to St. Cloud at the rate things are going for me. I have a page of questions this time for the doctor and have done a lot more research since we saw him last 4 (!) weeks ago already! I've found that other Mommy of FPIES Babies blogs are the most informative. From what I've read based on other Mom's experiences, I'd say Kara is probably about the middle as far as severity goes but we are just beginning this diagnosis. Who knows what the future has in store for her. I've also signed on to a community message board at babycenter.com and there is a group especially for FPIES. I started this last night so I'm asking lots of questions and hoping for answers, and also to give my advice based on what we've experienced. It's nice knowing there are others out there experiencing very similar situations to what we've experienced!

I gathered all of Kara's medical records today from the hospital and the clinic. I was smart this time and got copies for myself as well and will file them all together so I don't have to keep doing this over and over again. It's also a nice refresher to look back on to see when things happened and how they happened, as well as keep track of her weight ups and downs. I'm trying to get more organized hoping it will make things easier for me because this has been consuming my life lately!

I'll update as soon as I can after Kara's appointment tomorrow.

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