This last week our youngest, Miss A (currently 9 months), was diagnosed with Food Protein Induced Enterocolitis Syndrome (FPIES). We have a challenging road ahead of us, full of unknowns and uncertainty. The diagnosis is just the beginning.
In short, it is a delayed (symptoms occur typically 2-3 hrs after ingestion) food allergy that cannot be tested for (trigger foods do not show up on standard allergy tests). The danger is anti-histamines and epinephrine have no affect, and the outcome is severe dehydration from repetitive vomiting, which can lead to shock.
Really we don’t know much of what’s to come. So far we know of 4 foods that make her sick, with no known safes yet. The only way to find safe foods is trail and error with extremely vigilant label-checking and documentation of foods tried and reactions that follow. Hopefully these 4 foods are all she reacts to, but it is possible she could have numerous triggers. We also are still unsure of how sensitive she will be to exposures, and how severe her reactions will become. The good news is kids typically out-grow this condition around 3 or 4 yrs of age.
Those that know us well, know our family is riddled with food allergies. Each person having different allergies, our list of safe foods we can share is quickly decreasing. I’m thankful that I am comfortable in the kitchen and usually enjoy finding recipes that work or experimenting to create new ones that fit our family. I lack discipline in the cleaning department though, and will need serious focus to ensure my floors are completely food-free and safe for my now crawling babe. (Side note, she crawled on hands and knees for the first time today! Yay!)
After a few days of letting this news sink in I am fluctuating between confidence and hope, and anxiety and fear. I am typically very optimistic and hope that I can continue to take this one day at a time, resting in God’s strength and peace. After all, the meaning of Miss A’s name is divine strength; to receive her strength from God.
If you want to know more about FPIES, go to http://fpiesfoundation.org/about-fpies-3/