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, February 9, 2011

Ears Again:

While at the doctor today, it was agreed on that it's no wonder Kara's been so irritable lately with how her skin looks. We were there for a check on her skin, a listen to her lungs because of that barky cough that's still lingering and then a check to see what was going on with her ears. Last week we were given a prescription since one ear was a little red. If she spiked a fever or if we otherwise thought she needed it we could fill it but that didn't happen. I didn't feel comfortable filling it when I didn't know what was going on inside. An antibiotic could be very risky again, causing her another reaction.

Kara was a little entertainer in the office and a very good patient. She's so good about getting checked out. After her skin was examined, she turned her head over to get a good look in her ears. Right away, it was commented on about how awful it looked. She coudlnt' believe she wasn't sick, or even MORE fussy than she'd been. Yuck. The other ear? Definitely red as well, but not nearly as bad. Great.

Here is the antibiotic conversation:
Dr: Which one does she NOT react to?
Me:No idea - she's had two and she reacted to both.
Dr: Amoxicillin or Zithromax?
Me: Well, we don't know about Amoxicillin, and she was in the hospital after Zithromax last year.
Dr: Ok, we'll go with Amoxicillin.
Me: Is that going to be strong enough to cut the infection?

Hmmmmmm...cross your fingers for us, pray for us, whatever it takes.
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2 comments:

  1. KristinaFebruary 11, 2011 at 10:47 AM

    Kendall
    I am trying to get caught up on your story. It sounds so familiar! My son has been sick his whole life with respiratory issues, difficulty swallowing, failure to thrive, RASHES that no one can explain--we did all the allergy testing and everything was negative months ago. Just two weeks ago a NEW GI doctor told us about FPIES. I am sort of in shock and now just trying to learn all I can. I'd love to talk with you more--are you on baby center or face book? I am just trying to connect with other mom's because I don't know anyone in colorado with this. Thanks!
    http://www.imexpectingtheunexpected.blogspot.com

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  2. KendallFebruary 11, 2011 at 7:14 PM

    I'm on facebook a lot more than I'm on babycenter - Nelson is my last name. I'm sure we have a lot of mutual friends in the FPIES world. I would love to talk. I'll check some of my FPIES Mom's and see if I can find you. :)

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