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, August 4, 2010


I am becoming obsessed with finding answers for Kara. It's all I think about all day, every day. I'm brainstorming, trying to get to the bottom of what's causing her reactions, and trying to put things together based on other Mom's experiences. I walk in the door from work lately and go straight to the computer and catch up on the FPIES blogs that I follow, check the message boards on the FPIES group that I belong to now and do my facebook thing in between. I hop on the computer every free second that I have, doing new google searches for updated info. I feel like I'm constantly learning yet coming up with nothing. I know my obsession gets frustrating to my family but I am determined to make things right for Kara and feel that I just can't do enough to care for her properly. Everything else is going to have to wait. I'm exhausted yet my mind is running a million miles an hour and I won't stop until we get things figured out for her.

Kara seems to be having a decent week, despite the mommy meltdowns earlier this week. She's actually had a good last two days and I say that hesitantly because two days is about the maximum amount of time that we get for good days with her. She wouldn't drink her bottle last night so I worried about a tummy ache. She was up in the night for quite a while and refused her bottle so I was worried about a tummy ache. She got up this morning and refused her bottle again, so again, I worried about a tummy ache. I brought her to daycare stating she wasn't acting quite right so call me if there are any problems. Kara had a great day, Mommy overreacted. (Go figure!) Tonight she wouldn't eat supper. I caved and gave her a few crackers because I figured it was better than nothing. She drank 4 ounces of a bottle and that was it. I'm nervous something is going on, or starting but I'm trying to stay optimistic. Friday can't get here soon enough!


  1. Ohh... I am so with you. I am obsessed. I check the blogs and FPIES message boards and search and search and search and doubt this diagnosis half the time. So much of what doctors say and moms observe doesn't add up or make sense or follow any pattern! Take care Kendall :) I know that we will all do whatever it takes for our kiddos, but don't forget to take a break and take care of yourself.

  2. I understand, I read the same information over and over...

    Also, your LO can have crackers? What kind?

  3. Thanks guys! I'm anxiously awaiting our appointment today with the GI. We'll be leaving in about an hour. We were supposed to get away this weekend but with Kara not doing well earlier in the week, I just didn't think it was a good idea. Now she's on day 3 of good days, maybe we should have gone! :)

    Nikki-you had me second guessing myself on the crackers so I went and checked, double checked. I have a few different ones that I give her, mostly the saltines. Her soy reactions only happened when she had straight soy milk so we try and do minimal soy. This is why she can have things like crackers, once in a while. We also could do minimal dairy, like low on the ingredients lists but now she's been dairy free for a month to see if that made any difference and it didn't.