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.

Thursday, May 19, 2011

FAIL

A few weeks ago Kara, about 3 hours after dinner, Kara started vomiting. I was very suspicious about the green beans that she ate for dinner that night. She had had green beans in the past but we don't eat them and we hadn't had them in a long time. Because of this, I figured we should re-trial to see if they were a true pass or not. I very well could have prematurely called them a pass.

We've had some strange symptoms. Night waking, one rotten diaper per day, but nothing was really clear. The last three nights she's had beans consecutively. Two nights ago she was awake in the night crying. Since Brenna is a bed-hopper and ends up in our bed each night, Brian got up with Kara and took her to B's bed. Kara cried for quite a while before finally settling in. We got to daycare yesterday morning and I explained the circumstances of the night before. With that, Kara had a nice, big, sour burp. I gave the daycare gal a quick report - she hadn't pooped yet but to please let us know if she has a few dirty diapers and if they continue to be "nasty". I called around 11:30 yesterday and she had only had one and seemed to be doing just fine. Hmm. The question continues. Is it the beans? Is it teething? She's been chewing on her hand, way back in her mouth quite a bit. Her eczema is broken out pretty bad, all over her back and tummy as well as her normal problem areas - creases and tops of her feet. Is this just "normal" toddler teething (molars?) behavior or are we working towards a build reaction? Unfortunately, the only way to find out for sure is to keep going. I felt fairly confident that she'd do fine - we haven't had a true food fail since last July when she got so sick from pears!

Yesterday was Kara's birthday. We had an event at the fire hall to attend and a bbq afterwards. I packed Kara's dinner - a hot dog to put on the grill, green beans, a bowl of fruit and potato chips. Her dinner was almost the same as everyone else, yet perfectly safe for Kara, or so we thought. We got home, put our tired out kiddos to bed and soon followed.

I woke up to Kara crying around 1:00 this morning. She was crying pretty hard, and I couldn't seem to snap out of it. I got Brian to wake up and run up to check on her. He hollered in the monitor for me so I followed, to find Kara's crib covered in vomit. Nasty, sour, green bean FPIES reaction vomit. She was ok, just very upset about throwing up. I was going to clean her up at the sink but it was everywhere so I gave her a bath instead. She seemed ok, let me wash her hair, we finished throwing pukey bedding in the wash, getting Kara in new pj's and snuggling her to make sure she was going to be ok. We went to Brenna's bed again. I asked her if she wanted a bottle. Her Neocate usually settles her down, I think it makes her feel good, often times. I was  cleary NOT thinking, it now being 2:00 a.m.. We snuggled in Brenna's bed and not long after Kara started puking again. I hollered for Brian this time, and we both held her as she emptied her stomach again. Over and over again until there was nothing left to come out. I kept watching her, watching for signs of shock, making sure she was staying "with us". We've been down this road before and it is one of the scariest things we've gone through with her. She seemed to be doing ok, we did all the clean up again and both laid with her. Kara laid awake in bed until about 4:00 this morning. I couldn't sleep either. She'd hold my hand, snuggle, say "Mama" once in a while to make sure I was still there. So sweet.
This morning I am home with her. Her mood is like being on a rollercoaster. Happy, sad, mad, she just simply doesn't feel good as much as she's trying to be ok. Her face is really puffy, her cheeks are bright red. She's eating and drinking decent so I'm just watching for signs of dehydration, trying to make sure we dont' go down that road. In one of her fussy moments this morning I asked her what was "owie" and she pointed to her ear. Do I dare trust a newly-turned-two-year-old? That'd be all we need is another ear infection on top of this green bean fail reaction.
Bring on the weekend. I'm ready for it.

2 comments:

  1. I'm so sorry :( Poor Kara. Green beans scare me. Jake reacted to them through my milk, too. I think that will be something we wait until 2 for... or maybe later. Glad she's recovering and hope she's back to her old happy self very very soon. (Hugs)

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  2. oh my goodness. Fails suck. I hate these times. They are so scarey, and make a momma feel so helpless. Im so sorry. Praying for fast healing and sleep. Hoping things are looking better.

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