FPIES Beyond Age 5

If you are reading this article then chances are that your family is in the same situation as ours. We waited patiently until Age 3 hoping our son would outgrow his FPIES and then waited a little less patiently until Age 5 praying this was the end of our FPIES journey.... but it wasn't. According to all the research articles we read there was definitely a good chance that this year would be different and I suppose I had it stuck in my head that Age 5 would be the magical number...but it just didn't happen. So what now? Where do we go from here? When is the next "magical age" to look forward to?

The truth is I have absolutely no idea! All we can do is live in the "now" and make the most of each and every day. We continue to trial new foods adding to our "safe" list. I have stopped keeping track of every small detail and given up on trying to complete the never ending puzzle that is FPIES. And although I still feel the weight of our son's food allergies on my shoulders, it has lightened some over the years. My son has started advocating for himself and knows to always check with my husband and I before eating something that may not be safe. His big sister advocates for him as well, and she is always reading food labels and reminding others of her brother's food allergies. Life must go on, no matter how scary it can be sometimes!

Our FPIES kiddos are the true heroes. My son has to do hard things everyday but he never complains. He attends birthday parties knowing that he can't eat the same treats as the rest of the kids (he has a safe cupcake to bring along, but it is not the same), and yet he is just happy to be able to go. He is unable to eat at restaurants after too many bad experiences, so he eats his packed safe food instead. He enjoys participating in holiday fun (trick-or-treating, Christmas parties, Easter egg hunts, etc...) knowing he won't be able to eat most of the foods that are expected to come with each holiday. How brave and understanding can a 5 year old be? It is amazing how resilient our food allergy kiddos are. So much of our culture is focused on food but somehow my son can see beyond that. He is just happy to spend time with friends and family while joining in the fun!

My new goal is to take a lesson from my son! I hope to worry less and enjoy more of the non-food fun that life has to offer each and every day. What a blessing to be able to share this life with such a special little guy.