Sunday, April 3, 2011

Food-- Its a Conditional Kind of Love

I, being a romantic, firmly believe that love should never be conditional. Love of food and food's love of B? Well, THAT is quite a different story!

As many of us struggle through food trials, we are often forced to think outside of the box and work with what options we do have. For us, we have found some success in what I like to call "conditional food." Now what on earth is that, crazy woman?! you may ask. It is making food-- some select foods-- work for B under some very specific circumstances.

So what do we do? We cook fruits, we twice cook a veggie and then bake it into a cake, we boil milk, we restrict serving size to no more than a taste every few days. . . all in the hope that eventually, she will tolerate that food in more than one form and in a normal, age appropriate serving.

This all began over a banana and a pear. After a few rather unpleasant severe fails in the beginning of our journey, I learned (though not quickly enough!) that unless we got creative with how our food was prepared, B was not going to tolerate any foods 100%. There would continue to be tummy trouble, reflux, diarrhea, sleepless nights--- not progressing to severe reactions, but holding out at a level that I was not comfortable with B being subjected to. We ditched the store bought baby food. We picked up a skillet (for the banana) and a saucepan and colander to steam the pears into mush. We monitored serving size extremely closely and alternated days. Slowly, foods that were "Kinda sorta. . ." passes became solid, "We can do THIS!" passes. And slowly, we began moving up this enormous hill of food trials. Corn, our first "big" pass, was as slow as molasses! We literally gave her only two (TWO!!!!!!) Kix each day for the first week and only five per day for the next week. She did not receive more than 10 Kix per day for almost a month, 20 Kix per day for several months following that. I literally counted those ever-loving, stinking tiny spheres. At the time, it seemed ridiculous, it seemed like a waste, it seemed like I was doling out rations rather than toddler snacks. It should be all or nothing right?! For us, the answer was "Not always."

Restrictions on corn (other than avoiding corn meal) and pears are now a thing of the past. B eats RAW pears! And she can have a couple of servings of pears each and every day, with no issue! Corn is a staple in her diet and she can also have a couple forms of that each day as well. Bananas still must be cooked, but there is no limit on how many she can tolerate cooked. Recently, she proved that she is now able to eat a full serving of pineapple in a day, cooked or freeze dried! We now have a new set of  "conditional foods"-- beets, spinach, millet, hemp, and hopefully, if the trial ends well, broccoli. It is my hope that with these rotation and modification methods, these foods will be able to be added to B's diet in "typical" age-appropriate serving sizes as well.

Without these modifications and putting certain foods into rotation type diets, B would not have nearly the amount of safe foods that she does (now we have 14 safe foods). It has really been a cornerstone to her success with some foods. But the trickiest thing in all of this was not figuring out the modifications but figuring out what could be salvaged as a safe food, what really was a potential pass (even a partial one) and what really was an unsafe food that could not be modified to ensure tolerance.

For every child,  it is truly different. I wish our formula could work for everyone! And it might work for some others, but sadly, despite the like diagnosis, this crazy FPIES can present in some wild ways, in ways very individualized to each child it seems. Let me tell you how we sorted out this safe vs. unsafe, partial pass vs. fail, work in progress vs. abandon ship (!!!!).

Work in progress---- We notice signs that seem like a minor fail or the beginning of a build up fail. The reflux flares, the diarrhea or excessive mucous in diapers, the sleep and behavior disturbance. Our first step is to change how the food is prepared. Can we cook it? Can we cook it twice? Will boiling the food make it better tolerated than roasting? Can I put it in a baked good (my favorite option!)? If symptoms persist but DO NOT WORSEN, we continue on. We try reducing the serving size, even down to only a teaspoon of a food in a day. We try rotating days; beets and spinach for instance can only be tolerated well if given 2-3x per week. We try changing the circumstances surrounding the food to foster tolerance. When we find a way to make the symptoms disappear, it is a tentative success. The method we decide on is the protocol that we follow with said food for the next month or two, minimum. When we think she is ready to try a little bit more of the food, the process begins again,

Abandon ship!!!!--- We notice signs of a minor fail or the beginning of a build up fail. After attempting modifications, we not only see no change, but symptoms continue to progress and/or new symptoms appear in addition to the original ones. After a few days of this, it is evident (in B's case!!!!) that the food is a fail and needs to be pulled.

Sadly, it is not always possible to "save" a food and "Abandoning ship!!!!" is truly the best course of action. And as always, the only person best qualified to make those decisions is the parent of the child-- you know your child best! Doctors can be excellent resources (of course!) for giving an objective opinion, for giving a different perspective, for helping us as parents to see the situation and potential options we may not have considered previously. That said, sometimes a food can be salvaged and as I like to say, something-- even a ridiculously tiny something!-- is better than nothing. I can cook a "something" in my pan; I can't cook a "nothing" (though believe me, I have tried to think up ways to do just that!)

Happy cooking and good luck thinking outside of the box! Sometimes the best answer is the answer you may have never considered, even if it only seems like a drop in the bucket in this huge task of food trialling.


  1. This is awesomely inspiring Amanda!!
    Ah, to get to the rotation diet stage with Sam!
    PS- this is a PIC post, right?!! :)

  2. It can totally be a PIC post! Let me know if you need any changes to be made!

  3. wow. so inspiring, indeed! And another intriguing piece for me to 'chew' on (har har). You are amazing with the amount of time you spend and creativity you have...dedication....all for your Baby B. Good job mama.

  4. Thank you!!! You are pretty amazing yourself, mama!

  5. I had bookmarked your blog when my daughter was first diagnosed 10 mos ago, but we were no where near regularly trialing foods so I hadn't started reading it. The last 2 months have brought our first 4 passes and I have found your blog to be so helpful!! This post is especially interesting as we have had a few minor fails on top of our major fails and I am now wondering how I could make the minor fails into passes. Thanks for sharing your experiments!