Monday, August 2, 2010

The Here and Now

So let's see... last I left you we had been to the allergist and learned that Ginny is 'regular' food allergy free and I went on a little dairy binge. I'm not gonna lie to you, it was yummy. I ate dairy and eggs (in reasonable quantities, it really wasn't a binge) Monday night, and all day Tuesday, Wednesday and Thursday and, by Thursday, Ginny was a rashy, rashy mess. Why? Your guess is as good as mine. I cut dairy out again and the rash cleared up. I slowly re-introduced it again and.... nothing. Nothing at all this time. Remember, she could have no 'regular' allergy to milk, but still be intolerant to it and reacting or, not have either an allergy or intolerance but it could still trigger an FPIES reaction. Only time will tell.... But for me, for now, I'm back to eating anything and everything (and, to be honest, because I'm exclusively nursing a 9 month old, I'm eating a lot of everything). Just an aside, should you ever REALLY want to lose some weight fast, go dairy and egg free.

Can you see Ginny's rash?

Today, we returned to the allergist for environmental allergy testing and with fingers crossed that he might have news for us about the experimental patch testing being done to identify FPIES triggers. Ginny was a doll, flirting with and smiling at everyone - and she once again came out allergy free. HOORAY! This time, I didn't have to ask to see the doctor either. I heard him remind the nurse that he wanted to meet with me after she measured the results. And the news? He did talk to a doctor at CHOP (Children's Hospital of Philadelphia) and learned all about the research being done there. Apparently, patch testing for both milk and soy is 95% accurate. NINETY-FIVE PERCENT ACCURATE! That's phenomenal! So we'll be back in 2 weeks for those tests. I'm not sure that this makes our allergist Mr. Incredible, but I do think I'll call him Boy Wonder from this point forward.

This is all good news. No 'regular' allergies of any kind means that it will be easier for us to ensure that Ginny is reacting only to a food we're feeding her. Patch testing will let us know if milk or soy are FPIES triggers for G. That only leaves 7,589,745-ish other foods to try.... Sigh... I know, I know, I should be more positive. I am really anxious to start feeding her but... but for right now, she's healthy and safe. Although we intend to avoid all the major FPIES trigger foods anyhow, it is very unlikely that we'll manage to avoid more episodes all together. Or, even if by some stroke of genius we did avoid all major reactions, we could still irritate her system often enough with lesser reactions to cause problems. But she has to start eating sometime and there's no time like the present, right? We've learned about which foods are the most common triggers, found out about ways to test for 2 triggers and ruled out things that might interfere with our own food trials. We've done all we can to be ready.

So, you're all caught up. You know, more or less, what we know and we'll all move forward together now. The next step? Pears. Yup, we're going to start our first food trial soon and pears will, most likely, be our food of choice. Pears are very low on the FPIES reactivity lists and we'll trial them over a two week period. I think we're going to make all our own foods (we did for Ellie anyhow) to make sure we're avoiding all additives, etc. that might cause problems. We'll start with a teaspoon and slowly increase the quantity and watch what happens. Bloating, gas, excessive fussiness, blood in her stool, reflux, diarrhea and diaper rash can all signal that Ginny's body is rejecting the food long before we get to a quantity large enough to cause a full blown vomiting episode. (Wow! I thought I would never post without mentioning poop or vomit and I did - for at least the last 3 posts - but now I managed to include poop, vomit and more all in once sentence!) I'm not gonna lie to you. I'm petrified. I'm really scared to feed my kid pears. But the time has come. Are you with me? I will, of course, let you know how it goes...

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