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 8, 2012

The Last Month

Wow, nothing like leaving you hanging!!! So sorry!! It seems like I could name every post lately "Update" because I've been awful about updating!

Kara's second set of labs turned out to be ok. She does have high antibodies so we are keeping a close eye symptoms, which is actually quite comical if you know the symptoms of hypothyroidism, Kara, and two year olds in general! We will be going back to the endocrinologist at the beginning of April for another work up to see if we can truly relax about all this thyroid business!

Kara continues to be up and down. Her moods swings are terrible but when she's happy, she's the best little girl, playing nicely, entertaining herself. Her appetite is non-existent one day and we can barely get her to drink her formula, some days all she will drink is formula, and other days we can't seem to get enough food into her. Again, typical two year old but what IS typical with her?

We did a beef trial and it seemed to go ok. We called it a pass two days ago, however she has her days where she is all over the place - lots of crying, clinginess, all out of sorts and we finally give her some motrin after not knowing what else to do, and she settles down. We know she still has some stomach pain but that slowly seems to be getting better as well. All in all, we aren't getting very far but she has been stable and not losing foods again, so that is all that matters, right?

2 comments:

  1. I've been wondering about you guys. This seems like a little tiptoe in the positive direction. Right? Count on our prayers......

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  2. I sure hope so!
    I neglected to blog about the influenza - I need to get time to actually sit down and process and get back into the writing mood! One of these days!
    Thank you for your prayers!

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