In the beginning of this journey, I was privileged to have a pediatrician for our boys that was good about knowing what ways she could empower me. One of those ways was (and some may not understand this but thankfully she understood enough about me to know I needed it)....was to say she was stumped. After week upon week of bringing Little Man in to her office, repeated visits for new symptoms or to review current symptoms, practically begging and often crying for help, thinking that if I just told her about this new symptom or did I forget to mention that incident; will I get closer to some answer she in her knowledge and experience, is considering? Then, one day, she sat down and said, "I just don't know". Words probably easier for me to hear than for her to say (yes, words easier for me to hear). I remember that day still so well because it changed my thinking, it changed me from waiting for someone to have an answer, to me finding an answer. It empowered me. She didn't know, but I did. I didn't know about FPIES then; but I knew my son, and I knew something wasn't right. I would research day and night,and write down everything,and read every journal article I could get a hold of (which was only less than a dozen at that time).
Once we did finally find the diagnosis, I entered support groups, and I found myself surrounded by families in so many similar situations. The need to be empowered to know how to care for this child with this rare, little understood allergy is so great, it is so needed. A mother has the intuition to care for her child from before they are even born....a connection so deep- poetic words (that I do not have) can only begin to describe. What we don't know instinctively we instinctively know where/how to learn. But then, your child has this allergy that doesn't follow any rules and that robs you of the basic need to nourish them and you feel like you're standing alone and your toolbox is empty, or the tools you have in it don't fit at all and you lose time trying to use them, trying to make them fit.
So, during Food Allergy Awareness week, above other times in the year, my awareness is increased and I hope yours is too, and you will help spread the information about Food Protein Induced Enterocolitis Syndrome so that more families and more medical providers, are empowered to learn more, and become equipped with some basic tools for thriving through this disordered allergy of the gastrointestinal system.