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.

Sunday, May 1, 2011

Update: Allergy

There was some confusion with my Allergist post and I need to clarify some things regarding Kara's dairy allergy.

We were told that the RAST blood test numbers can range from .01 to 100. Kara's level is a 1.75. On a scale to 100, that's very minimal. She did have a positive skin prick test but there's a good chance that she could be able to handle dairy in baked foods, so his suggestion was to trial it in a piece of bread. It is nearly impossible to find a safe bread for Kara anywhere within a 60 mile radius. When I get to Maple Grove, two hours away, and IF they have her bread in stock, I buy a few loaves and freeze them. Bread is a rare commodity for Kara. So, basically I would use my discretion as I have with her and the minimal amounts of soy oil that she gets in her diet.

Our Allergist said IF she reacts, it will most likely be an FPIES reaction to dairy, not that she'll have an IgE reaction, which is a "typical" food allergy reaction. So, it's a shot in the dark, as all of our food trials have been. Dairy is on "the list" but so was chicken, eggs, and a few other foods that she's passed.

When the time is right, we'll trial dairy in the form of a piece of bread and be very careful, watching the clock that first day and watching for build reactions as the days pass.

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