As Hallowe'en approached, I was being extra careful about any accidental ingestions. Matthew, dressed as a monkey, loved Hallowe'en and thankfully didn't really understand that what he collected was edible! In actuality, I think he just enjoyed the experience of Hallowe'en: making some arts and crafts, baking Hallowe'en cookies, visiting Riverdale Farm including their Boo Barn, carving pumpkins (he named our Jack O Lanterns Joe and Moe), dressing up and going house to house and seeing all the cool decorations and saying "Trick or Treat!" It wasn't at all about what he collected - he never asked about his candy after we came back. He was more interested in talking about the big raccoon he saw (which at first he called a beluga, LOL!) Now, he is talking about Santa and Christmas every day and I know it's only a matter of time until he demands what is his.
So, perhaps because I have been avoiding rice for so long, I seem to have developed an aversion to rice myself!!! I literally shrink back when I see it. Rice was a prominent staple in my life and in my husband's before FPIES. But now when I see it, I feel the pain of Matthew getting so sick. Classical conditioning? That's why it surprised (and crushed) me that I am the one who accidentally fed Matthew rice.
I have been more sleep-deprived than normal for a variety of reasons. A few days ago, on the weekend, Matthew said he wanted waffles. I knew hubby had put some in the freezer, so I made a couple of blueberry ones. I thought it strange that they weren't the Original flavour that usually buys but then I remembered he and I had some a couple of weeks prior to that so he bought blueberry. However, I did have a nagging feeling about those pancakes. They weren't in the box - we had to throw it out to fit it in the freezer - so I couldn't check the label. Now, normally, I wouldn't risk it. But, sleep-deprived me thought back to when I ate some gluten-free (read: rice flour) waffles and didn't think they were blueberry, so that meant, these waffles were not the ones with rice in them. (Even now, I am wondering how I could have thought that?) So, rather than wake (my also sleep-deprived) hubby up to check, I gave Matthew the waffles. The day unfolded normally.
After Matthew went to bed, hubby opened the freezer and noticed a full box of Original flavour waffles that were still unopened. He said "I thought you gave Matthew waffles for breakfast?" (Yes, FPIES parents discuss all food that is given!) I confirmed that I gave him the ones that were "already open, in the bag". He blinked at me in disbelief and then said in the nicest possible voice "Those were the gluten-free waffles". I froze. I felt a pain in my chest. I couldn't breathe and my eyes opened wide. Hubby started walking towards me and I burst into tears in his arms. "I can't believe I fed him rice! I'm a terrible mother. I'm so sorry!" He reminded me that there was no reaction, and that everything was ok and it took me about ten minutes to stop crying and calm myself. Usually, Matthew's food is kept separate but in the freezer, labeling is even more important.
My Facebook FPIES support group were so sweet, reminding me that it happens to everyone and that, it might be the beginning of him passing rice. Some urged me to re-trial, but I just haven't been able to. I don't want to hold Matthew back but I'm too terrified of a reaction and still plan to wait until the in-hospital trial at 3 years old. I don't think I could live with myself if I fed him rice on purpose without medical supervision and he still reacted.
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