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 3, 2010

Better Day!

This afternoon I got a phone call at work from the nurse from the U. She asked me a few questions about Kara, when and where we are being seen and then told me that Kara is seeing the best. She explained that FPIES is a pretty new diagnosis but there are many other things with very similar symptoms that they've treated. She said that this doctor is definitely a good match for what we are dealing with, with Kara. I was overjoyed to hear this! Maybe this will finally be the answer we've been waiting for!

She asked if I had any info about Kara and I explained that I have all of her records from birth. She requested that I fax them to her so she can review them for pertinent information and go over what I had told her with the doctor before we go for our appointment so the doctor will have a better idea of what we are going there for. I got these faxed this evening, all 79 pages of it. I was going through it to see what was pertinent in those 79 pages and each page had something about vomiting, diarrhea, fever, not eating, eczema. I guess everything is!

I got home and filled out the paperwork on family history and concerns that we are to bring with us. My spirits are lifted now and I'm anxious for Friday. Of course, I hung up the phone and felt like I was going to cry again, but this time it was happy tears. I'm praying that we get more answers Friday and this emotional roller coaster will stop, or at least slow down a little bit!

No comments:

Post a Comment