Deciding to pull a food when it hasn't been an 'obvious' fail with a classic FPIES reaction or severe symptoms otherwise is one of those zillion shades of gray that exist in dealing with this beast. We need to find safe foods. But what what does safe mean?
Safe to me means that my child is healthy and happy; thriving in every way. I just can't bring myself to believe that forcing consumption of a food that only makes her mildly miserable is good for her... even in the long run... even if its a particularly nutritious food. We've hit one of these murky roadblocks with quinoa (I guess my quest to rule the world will just have to wait..).
I've heard the phrase 'pushing through symptoms' quite a bit since our introduction to the FPIES world. Essentially the idea is that you might have an uptick in reflux, sleep disturbance, diarrhea, spit-up, and the like then come back down the other side after a certain amount of time (days, weeks?) and tolerate the food. I agree with it to an extent. When we first introduced Neocate, we did see all those symptoms I just mentioned for about a week or two. She then started to show signs of the symptoms easing and actually doing much better than before formula. If we had pulled formula right away at the first sign of reflux, we would have missed a very good opportunity to get her nutritional needs met. Solid food is proving to be far more complex. Rice and Oats gave us 'classic' FPIES acute reactions. Banana and Carrot gave severe sleep disturbance, mucous diarrhea (followed by blistering diaper rash), and reflux among other things. The symptoms progressively were getting worse and it seemed to be as cut and dry as FPIES can be that the foods needed to be pulled.
Quinoa has us in a strange head space. Livvy's poop wasn't 'normal'... but was it just the extra fiber and concentrated protein? She got hiccups a few times... just a fluke or slow-burn reacting? Cheeks were a bit more pink... but, then again, she IS a redhead with pale skin... symptom or negative sign? Naps were not going well at all .... 1-year-old attitude or sleep disturbance? Occasional fits of inconsolable crying ... teething pain or cries of tummy pain? By themselves, these things seem benign enough. All together at the same time the cumulative effect had to make me wonder. So we've been holding back on quinoa and all these 'meaningless' symptoms essentially disappeared. Dang it. I mean, its good that these things stopped. But its so frustrating that she wasn't overtly reacting to it, but wasn't actually tolerating it either. Quinoa is such a nutritious food, and having a flour opens so many doors as far as cooking goes. But I can't keep subjecting her to something that's just plain making her sad and not feel 100%. Right? ....... Right?!?
The last thing I want to do is be too overly protective and pull foods that would be good for her (nutritionally) for her to consume. But I have to consider her quality of life also. Elemental formula is meeting her basic needs, so its not like we are at risk in that respect. She's 90th percentile for weight at last check, so we are far from failure to thrive territory. Liv deserves to be happy. There must be other foods that we can fill in her diet with that will allow her to both be nourished and happy. So we're pressing on, but we will be doing so without quinoa.
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