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, October 20, 2010

Results

We got the results from Kara's scope. Everything was completely normal. No disaccharide deficiency, no celiac, no esosiniphil problems, nothing. This is wonderful news. I was prepared for a disaccharide deficiency, hoped we didn't have to deal with celiac as well, and figured the eosiniphil 'stuff' would be normal (I don't even understand what it is, nor did I do ANY research, that's why I have no clue what to call it besides 'stuff'!)

What I wasn't prepared for is to find out that her scope was normal. That's almost worse, the fact that we have no direction, no real answer to why she failed the pears so miserably, and yet, not in the typical FPIES fashion. I'm not sure where to go next. Dr. S. said we need to proceed to an allergist now. I let her know we had an allergist - Dr. Helm out of Maple Grove, to which she replied, good, he's a wonderful doctor. I said "Dr. Helm is the one who said she has classic FPIES" to which she replied "Than I guess that's what it is!"

Dr. S. has never once called what Kara has 'FPIES'. She has always referred to it as 'multiple food allergies'. This seems to be the norm amongst other FPIES babies and their GI doctors. For some reason, they just cannot accept the diagnosis. For Dr. S. to say that pretty much meant she was giving in - she ruled everything else out that could possibly be wrong which only left FPIES. Huh.

So, we have a call in to Dr. Helm to see what our next step is, knowing that Kara's digestive track is all good. I suspect he'll need to see her again, another consult would be wonderful, as I feel like we need some direction. I've stayed away from anything with too much sugar/fructose in it for the fear of another "pear fail" but I am ready to move on. Kara is ready to move on. She's clearly bored with her foods, even her newer ones and hasn't been eating well at all. She has, however, been asking for her ba-ba when she is hungry. I'd rather be giving her food though. I'm thinking pork, peaches, apples, wheat (which we are currently trialing, if I could get her to eat anything!) carrots, I'm ready to get the show on the road. I just wish she'd want to EAT!
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