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, October 4, 2011

A Setback

Kara had a really cranky, irritable night last night. I'm not sure anyone got much sleep in our house. She woke up this morning and seemed ok, so we got ready to go to work and daycare. I was tired, but hoping for the best!

I had a message this morning from Kara's allergy nurse. I swear, they somehow seem to know when we are having problems and call to check on things! Have I mentioned how amazing they are?! I told the nurse about how Kara isn't looking much better and how things went for us the night before. She said she would talk with the doctor and call me back shortly.

Around noon, our daycare gal called to let me know that Kara's cough was pretty barky sounding. I sort of panicked, as I tend to do, but was told that I didn't have to come get her, she just wanted to let me know. She said it was almost nap time so she could just put her down for a nap...No, I said, laying her down is only going to make things worse for her. I let her know I was waiting on some phone calls from her doctor, anyway, so I'd come get her so we could get a neb in her right away. I left work and went to pick Kara up. She wasn't terrible but certainly didn't look good! On the way home, I left a message for the allergy nurse to call me so I could let her know about the latest.

We got home, took a neb, had a bottle and snuggled in the recliner. Kara doesn't go too far from my side when we are together! I didn't have the heart to put her in the crib and had too much to do to snuggle her in my bed, which is our new favorite! The nurse called back shortly after. We talked about things, she told me the doctors suggestions and then ended up putting the doctor on the phone with me. We are two and a half hours away and this office respects that and doesn't want us to drive down if it's something we can take of over the phone!

Dr. Ott, Kara's allergist, explained how we cannot start food trials on Friday with how Kara has been. My heart sunk, I started shaking and wanted to cry. Forget about the anxiety with starting foods- now we are getting pushed back again! With how much inflammation Kara has going on with her airway and skin, it will be way too complicated to add anything new to her system at this time. She said to hold off at least another week. We talked about everything I've been doing with her skin, Kara's history last winter (constant nebs - pulmicort and albuterol) and the winter before (hospitalization from respiratory complications). She prescribed Kara a two week dose of Prednisone to help get this inflammation under control. We will do the slow taper off, as you do with Prednisone, and then start the Pumicort nebs right away. We discussed a small dose antibiotic to get us through the winter but I brought up my concern of her intolerance to antibiotics. She said she wants to see Kara soon, within the next two weeks so we made an appointment for the end of next week. I'm hoping we can get the food trials started after that appointment but am ready for anything at this point.

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