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, September 5, 2011

Tuesday's Appointment

Kara saw her doctor on Tuesday, a follow up from the latest hospital stay. We were so excited and she had her own little statement to tell the doctor. I should have gotten a recording of her saying it, it was too cute! "Owie tummy is all bett-a. No more owies!"

We were so excited to report that Kara had been tummy ache free for that week. What we weren't excited for, however, was the report of the eczema. It is back, in full force. I think I had previously mentioned this. Not only her normal, horrible problem spots on her poor feet and ankles but her bottom, behind her knees, her wrists, her arms, even her tummy was beginning to get that familiar, rough feel to it. "It has to be the wheat" is what her doctor told us. "Watch her on the wheat."

Our clinic received their flu shots already, earlier than ever, this year. We debated giving her the shot already, because she was actually healthy but opted against it. This is something she's going to need this year, whether we like it or not. With her immune system being so low we can't take any risks. Now watch, we'll be kicking ourselves that we didn't just do it when we did because we'll have a run of illness now. I hope not!

We discussed how we are waiting on hearing back from Cincinnati (still waiting, getting a little discouraged!) and how Mayo actually told us that they'll see Kara but Cincinnati or Milwaukee would be better choices to really dig into what is going on with Kara. (WOW!) I explained that with three different specialists telling us that, I guess Cincinnati is what we need to do! We left this appointment with no plans for any scheduled follow-up - we are usually seen two or three times between anything scheduled, anyway! We have to keep the flu shot in the back of our minds and update her of any changes, of course. Oh, and Kara has maintained her weight! Yay!

1 comment:

  1. I don't know if you still operate this blog. Who did you see in Cincinnati? Need help! Looking for a physician.

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