Sunday, September 26, 2010

Coconut is a pass, Beef is in our Future!

Coconut milk is an official pass AND I got B to actually drink some from a sippy today (I have been sneaking it in her quinoa flakes for the trial. Its just how I roll. . . hehe). I told her it was chicka chicka boom boom milk (you know, all of the letters go up in the coconut tree? Its one of her current fav books.) and it worked like a charm! It was only about 2oz, but really, that is HUGE for her. She still won't drink juice or even juicy water from a sippy--- only plain water. We will go slowly but we need to work her up to being able to drink 6 oz or more of something other than water from a sippy so that by the time she is 2.5, we can kick that dairy trial's rear!

So beef tomorrow! I am super anxious about this one. Because of how pork went for the oral challenge and for the patch test and because of my history with meat as a little kid, I am super worried about how she will do. We got the fresh ground beef (grass fed of course!) from Whole Foods today and tomorrow I will start with 1tsp and work our way up to 2oz by the end of the week. I am going to prepare it plain for the trial but if it is a pass, I will start creating some interesting combos.

On another note, remember our big quinoa dilehma when we started trialling it? Well, in case you don't, when we started trialling quinoa we were still in Japan and I couldn't find anywhere to get it. We had it sent to us and I started a three week trial. B had a lot of trouble with her reflux when we started it and had some behavioral and sleep issues, but it didn't quite seem like a reaction for us because even with the minor ones, you can always see the symptoms progress. These didn't progress, they just remained not so great. Well, one day I was reading the packaging and noted that it said the quinoa was processed on the same equipment as tree nuts. So I got to thinking-- what else could be processed on that line? Maybe rice? Maybe that would explain the reflux-- trace amounts of rice! So I called the company and they told me that the only thing prepared on the same line as the quinoa was wheat berries. Hmm I thought. That can't be causing her any trouble. . . .fast forward to today, almost two weeks post patch testing and her wheat patch, though it has stopped worsening and started finally healing, still looks a little rough. Now I wonder if the trace amounts of wheat were giving her issues. Here is the other piece of the puzzle--- when we got back to the states, I restarted B on quinoa but this time I used the ancient harvest brand. They ONLY make quinoa and some quinoa/corn products. No issues like there were before. Interesting, yes? I think there is a pretty good case for the trace amounts of wheat causing issues previously. Crazy cross contamination. . .

And finally, the last thought for this post. Our full-blown FPIES adventure has now been ongoing for over a year (I am discounting all of the craziness that took place BEFORE solid foods began)-- last September (around the 9th)--- was her first of the three rice reactions (vomiting, etc) and the first of 5 severe FPIES reactions. We have learned a lot in the last year but I am a little saddened that it feels as if we haven't come very far. It has been a rough year for B and a chaotic year for us as a family. I can only hope that this time next year finds us at a different place, maybe a place in which we will have outgrown reacting to new foods and only have our challenges remaining (9 from oral reactions, 6 from patch reactions). Here's hoping for moving forward and leaving a little bit more of this crazy FPIES behind!


  1. With fall approaching I keep thinking that we are approaching Kara's one year mark of her first full blown reaction. It saddens me because we, too, haven't gotten very far! I'm in the major FPIES depression lately and NOT liking it one bit!
    Our beef trial went great, except now she won't touch it. Go figure. I'm looking forward to B passing it so I can get some good beef recipes to hide it in, or whatever I have to do to GET MY KID TO EAT! :)

  2. Haha. It is all about the trickery and there is no food trick that is beneath me! I know how you feel about the "pass it and then refuse it" issue! So frustrating! Spinach is technically safe, but we have yet to re-intro it (took it out about a month ago because of the rashes and reflux) and she is still refusing the pseudo-cheese that she passed. Blah! I will find a way to be sneaky, I promise!

  3. We are approaching our 1 year mark too in November and although I don't feel like we have really progressed, I do feel very positive that next year at this time it will be a different story.