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, February 20, 2012


A few weeks ago, Kara woke up from a nap not feeling the best. By bedtime she had a pretty high fever, and by 2 am, it was 104.2 and she was grunting with her breathing. Panicked, we got up and headed in to the ER. Kara definitely had croup and was given a dose of Decadron after a clear chest x-ray, but before we left, I was talking with the doctor a little more about her IgA deficiency, the fact that we never did have a good time to get her a flu shot, and maybe, what if, do you think, that she could possibly have the flu? He said he doubted it, but given her history he would swab her for the test. He instructed us that we could leave after she was swabbed and he'd only call if it was positive, but again said he doubted that's what it was. We had the test done and were on our way home.
I got Kara back to bed and just settled in myself when my phone rang. Sure enough, it was the doctor. "I can't believe I'm calling to tell you this, but her influenza test was positive!" He had a prescription for Tamiflu at the desk for us to pick up in the morning when the pharmacy opened.
I was crazy worried about giving this to her, but the benefits were going to greatly outweigh the risks and with Kara's respiratory history this was something we needed to do. Kara made it through the five days of Tamiflu exceptionally well and we were able to get her through the virus at home until the following Monday when I brought her back in to her primary. She had another chest x-ray which showed questionable pneumonia, but again, we were able to get her through it with the nebs and medications at home.
Close to two weeks after the flu diagnosis, we were still noticing that she had a really icky cough but seemed better otherwise. The conversation between Kara's Primary and myself, and the Allergist and myself was whether or not we should put her on Prednisone to help with that. If she went on Prednisone we wouldn't be able to do a food trial and at this point, we are trying so hard to build her tiny diet. I ended up not filling the prescription and went on with a trial. She is still having some barking cough symptoms here and there but the nebs are doing their job and we are hopefully through this!

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