Sunday, April 24, 2011

Out to Lunch!

Hello, blogging world! So I have been out to lunch lately, processing and mulling. . . always fun with this diagnosis, am I right!? We received our test results from the study in NJ and while they weren't awful, they weren't great either. Dairy is apparently a big no-no, at least for a good long while, and for some reason, this has really hit hard. It was our last "biggie," our last true large "unknown" in the land of risky food trials. Yes, we still have MANY foods to trial, but dairy was our last big one that could have really changed the face of B's menu.

I found myself fantasizing over ice cream (REAL ice cream), cheese, yogurt from the STORE. . . as much as I tried not to, it was so hard to not get carried away in hoping for this one food to work.

But dairy has now joined the list with the other no-nos--- 7 of the 8 common allergens (passed white fish, haven't tried red fish which is supposedly more allergenic. . .), all of the FPIES common triggers (minus chicken), and the rest of the fails, all totaling up to 22 or so at this point.

There are a few other areas of concern in the NJ results so I am hoping that we receive more insight as to what these things mean as time goes on. These results, coupled with the strangeness of the peanut and cashew fails (still have NO explanation for the ridiculous hives--- prick tests all came back neg! Plus, the hives showed up 30 minutes or so post ingestion/post nursing with contaminated breast milk and THEN the FPIES symptoms occurred 2 hours or more post ingestion. . .peanuts eventually led to vomiting. . . recurrent minor hives flaring up for a couple of weeks following the vomiting in addition to residual diarrhea and blowouts for days following the reactions. . . ). All of this has made me very very tired. Granted, I am happy that a TEST told us to avoid a dairy trial rather than an oral fail. That is a HUGE blessing! And I am happy that we know enough now to stop a trial before it gets ugly.

My husband gave a great analogy tonight that really explains how I am feeling about all of this. . . He said it is like the goal post keeps being moved back. . . When B was first diagnosed, we were told to expect a change at a year-- we did some reading and though a change around 18-24 months seemed most likely. At 12 months, they told us that things would improve around 18 months, at 18 months they told us it would improve around 24 months, and now they tell us that improvement is not likely until 5 years old or so and to not expect her to outgrow everything, possibly ever. So when they tell us that there is an end in sight, I am inclined to stop believing. And just start living with what we see today, and the next day. All these "Deadlines" of a sort seem to do is make acceptance even harder because we are waiting for an end in sight and that end doesn't come. Perhaps looking at the improvements that we have made in adapting to living with FPIES would be a better way to gauge progress. . . . just more thoughts and mulling . . .

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