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.

Friday, February 4, 2011

Post Reaction 2

Beef went fine. We were extremely nervous the night we tried it and watched the clock. Once we hit the 3 hour mark, Brian and I both took in a big sigh of relief. The rest of the week, we stuck with her normal, 100% safe foods.

Kara isn't back to herself yet. One week later and we are still having effects of the reaction. She is extremely clingy to me, fussy, and just not herself. We had been nebbing her once in a while because of that barky cough but that seems to have cleared up for the most part. I brought her in to the clinic on Tuesday because she wasn't sleeping well, and I just thought it was worth having her ears looked at again. We couldn't see our primary but instead, her old primary - she had him pre-FPIES. Ears looked ok, one was a little red. He was more concerned of some sinus-type symptoms developing. Because of her history he was afraid to treat it quite yet. He sent us home with a script for amoxicillin, if absolutely necessary. He took time checking out her skin. He mentioned maybe trying a pro-biotic (this word seems to be coming out more and more in these FPIES Kiddos!) but didn't have a whole lot of advice for me on what to look for, since he isn't at all familiar with FPIES. He also mentioned that he thinks she would benefit from seeing a dermatologist. I asked what a dermatologist is going to have us do besides cetaphil, vanacream, cortizone, miconazole, and the other cocktails we use on her skin on a daily basis and he answered how they look at the big picture and might have some more ideas to get her cleared up. I put that on the list to talk to her primary about - I'll probably bring her back in this week, if possible, to check that ear and discuss the other issues going on.

Digestively, she's back to baseline, now is the trouble of finding baseline again for all the other systems!

No comments:

Post a Comment