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, January 2, 2011

Sunflower Seed Butter

It's been quite a week around here! After I was sure that there was no reaction from the chapstick incident, I decided to trial the sunflower seed butter. I put some on a piece of bread and Kara would hardly touch it. She was disgusted by the feel of it on her fingers. So much for that - I think she may have gotten a few little licks of it but that was about it.

The next night, I thought we'd give it another try. I spread some in a whole wheat tortilla and rolled it up, then cutting it in small pieces for her to pick up. I also toasted a piece of bread thinking that cutting that into bite size pieces might work as well. She started eating it really well, and really seemed to like it. A short time later, Brian's Mom stopped over and was talking to Kara when she noticed that Kara's hands were all red. She's had eczema all winter so I didn't think too much of it. A few minutes later it was her wrists and a little bit up her forearms. I started to panic a little and grabbed a rag to clean her up. It seemed like she was breaking out in hives! We got her all cleaned up and I dug the epi-pen out of the cabinet - it's been put away since we found out that epi isn't going to help her with an FPIES reaction. My anxiety built as I thought of what could potentially happen. We got her in the tub to get her all cleaned up and it turns out it was the eczema just breaking out worse from the food being on her skin. She's had the butter a few times since and has done just fine.

We have another pass on board, but the fear of a fail will always remain...

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