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, September 12, 2010

One Step Forward, One Step Back

Yesterday was Day 7 of our potato trial. If everything was still fine this morning I was going to move on ot another food because the potatos seemed to be a go. A third pass food! Yay!

I was away for the day at a big craft fair and Brian spent the day with the girls. I got home and he told me that Kara got a hold of Brenna's sippy again. I've been giving Brenna Kara's pear juice to finish it up. Brenna used to be SO GOOD about keeping her sippy's at the table only. I don't know how this keeps happening and I don't know what to do about it. I feel like we are punishing Brenna enough as it is to not let her have certain things, or snacks when Kara is around but these accidents are happening all too often lately with a curious toddler!

Kara woke up from her nap with a really icky diaper. I was home for a few minutes and had to change another one. Her bottom? Broken out, tomato red, open, bleeding spots. It happened that quick again. Pears are DEFINATELY a fail - at a few sips of half pear juice, half water she reacted like this about 3 hours after digestion. So. Is this an FPIES reaction or the sugar intolerance? I can't wait until her scope on the 12th, still one month away. I'm hoping to get some more answers about all of this.

Now we have to wait to get back to baseline again before we can start another food trial. Hopefully this little bit that she ingested will be out of her system soon - like by tomorrow! After the pear food trial she was sick for over a week before we were back to baseline.

As of this morning I still wasn't sure what I was going to trial next with Kara. I guess this gives me a few more days to decide. We see the new allergist on Tuesday so hopefully he has some insight for us.

2 comments:

  1. I know for a lot of mom's on the BBC FPIES board icky diapers are one of the starting signs of a fail. For my son, though, I've never noticed abnormal poop with his reactions. He has the classic delayed onset vomitting, lethargy, and in bad cases, shock.

    Granted, I didn't even think to look for abnormal poop back when he was having frequent reactions because I had NO IDEA what was going on with him. Now we've got things under control to the point that we haven't had a scare since a full on vomitting/lethargy reaction to green beans in February.

    If you already know she for sure has a sugar intolerance, I would probably think this was caused by that just because in my personal experience and in all the FPIES literature I've read, this doesn't seem to be a common theme. Diarrhea is mentioned in some articles, but this sounds different/more severe to me.

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  2. That was our discussion at the allergist today. I had no idea "back then" that I should be looking at poop that closely! The same with her random vomitting - it wasn't normal but I didn't know any different.
    Our new allergist doesn't really recognize the icky diapers to be an FPIES reaction.

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