Friday, February 25, 2011

Fool me Once. . . Fool me Twice. . .

Well, it is official. Peanut butter is now an official fail, as of Wednesday. And today, with a pink diaper in the midst of all of the mucous filled green ones (we normally have reaction diapers for a couple of days after a vomiting fail but never pink ones), I think we have our confirmation.

On the plus side, the reaction didn't require the ER-- a first for us in the realm of vomiting reactions. And she never let the vomit leave her mouth-- she kept her mouth shut tightly and every time she would heave and her cheeks would puff out, she would swallow hard before it started all over again. This also only went on for about 30 minutes. My poor girl. :( Yesterday we had reaction diapers all day and more today-- normal. But today, was the pink one. I called the ped, who said it was likely leftover blood from a GI "assault" (her terms) and unless we see more, not to worry. So we aren't worrying, per se, we are just down about losing peanut butter. I feel like the diapers confirm that loss.

Over the last two days, I have been feeling pretty discouraged. In less than two weeks, B will be turning two and we are still really in the thick of food trials, still seeing as many fails as passes. Growing out of this mean illness/disorder/what have you, seems very far away.

But today, I choose to move past it. It seems like there is something like a mourning period when a fail happens-- not to be dramatic, but there is a definite feeling of loss. And seeing how B handled the reaction and how much she loved peanut butter made that feeling of loss that much sharper. But we have to keep moving. There will be more fails I am sure, but there will be more passes too. For now, no new foods until after her birthday. I am NOT wrecking her day. I have some great new recipes to play with and we do have a short but varied list of safe foods to play with in the kitchen. We have appointments with our GI and allergist in Boston in a couple of weeks and then we have an appointment in NJ for the study the next week. These are some great docs between both appointments and hopefully they will give us some ideas, some direction. I am hoping for some answers to the hives that keep popping up, if this is morphing into something else or something more; I am hoping for a sign that she will outgrow at least some of this.

As far as nursing goes, I was hoping to start actively weaning soon. I don't feel like this is a reality for us right now. She has definitely decreased her nursing, and we do have the Splash as a backup, but with some decent sized holes in her diet and with the prebiotic benefits of nursing, I feel like I can help her to get through this in the healthiest way possible by continuing to nurse as long as possible. With the Splash as a supplement, I feel confident that even if I had to, I could nurse her through a pregnancy and on to (gasp!) tandem nursing.

Tomorrow is a new day, tomorrow will be a better day. I am no longer looking for an end to FPIES, but I am looking for better ways of coping and adjusting to our lives with FPIES.


  1. Ooohh, I posted here yesterday but I moved away from the page too soon and lost my post!!
    Just to say, I am always in awe of your strength and dedication...B is so fortunate to have such a great mom to get her through this crazy diagnosis!!

  2. Awww Joy, that really means a lot! Thank goodness for moms like you to share this crazy roller coaster ride with! The ride may stink but at least the company is good!

  3. Sorry to hear about the peanut butter and that things have been a little rough lately. That was me last week - very bad FPIES week! As for the decision to keep nursing, I can totally see what you are thinking. With all of the fails, why get rid of one of the best passes you have? It would almost be easier for you if the decision was made for you - ie if supply dwindles when pregnant, etc. Just know I'm here and thinking of you!

  4. Thank you so much, Megan! That means a lot! And I am sorry for your rocky week too! Seems like these kids follow each others patterns sometimes, doesn't it?