This blog got started because an enthusiastic Johns Hopkins graduate student decided to take the SNAP challenge and documented it here. Since then I have set myself lots of challenges–emptying my pantry, eating only local foods, and keeping my kitchen sink clean–with varying degrees of success. I like a challenge. I thrive in scenarios where there are clear rules and benchmarks for success. I’m sure the majority of home cooks of families will agree that sometimes just feeding a family with multiple food preferences, while being nutritionally balanced, and working around schedules is challenge enough.
But sometimes life hands you a bonus challenge, sets the rules, and defines success for you, like it or not.
In November of 2018, my 10 month-old daughter was diagnosed with Food Protein Induced Enterocolitis Syndrome, better known as FPIES. Our pediatrician had never heard of it. He missed the minor symptoms at her 6 month check-up. When I described her mounting, more serious symptoms at a later, specially scheduled visit, he was skeptical, but he gave me a referral to a pediatric allergist who could get us in about 10 weeks later. Fortunately for me, Dr. Google had given me enough basic information to know what I was likely dealing with, and a friend had a daughter with the same diagnosis, so I had an experienced mama to ask questions.
FPIES is weird. It’s basically an allergy, but allergy tests will likely come back negative. That’s how you know it’s FPIES (but not really). And the foods that make my daughter profusely projectile vomit are completely different from the ones that made my friend’s daughter vomit to the point of needing to go to the emergency room. No two kids have the same trigger foods. And while the classic signs is the projectile vomiting 1-5 hours after ingesting the food, other kids might have different symptoms, like bloody diarrhea. Or rashes. Or abdominal pain. Or gas. Or hives. Or sleep disruptions. Sounds pretty straight-forward, right? (Note heavy dose of sarcasm here).
FPIES is also rare. So rare, that it’s hard to even find incidence rates. The only number I have ever found is based on studies in Israel and Australia. They came up with 0.34%.
So here’s my new challenge.
Feed my family consisting of 1 pescatarian (me), 1 adult omnivore, 1 4 year-old with typical pre-schooler desires to eat PB&J for every meal, and a 1 year-old with FPIES. AND make meals nutritionally balanced and accommodating of our schedules. And without making too many dishes dirty. Or taking too long.
Lest I sound like I am just whining here, I am and I am not. I am grateful that I already have an interest and skill set in cooking and am therefore knowledgeable and capable in figuring out food substitutions. I am grateful that I am able to be home with my daughter and have complete control over her diet to make sure she isn’t accidentally eating her trigger foods and getting needlessly sick. I am grateful that being home means we can trial new foods more consistently to grow her list of safe foods. I am very grateful that most kids out-grow FPIES by the age of 3.
But I am also annoyed. It’s annoying to not be able to find safe first finger foods for my daughter to try. It’s annoying to worry about my daughter developing her fine motor skills because she doesn’t have easy finger foods to practice on. It’s annoying to have to make her food separate and not be able to feed her bites from my plate. It’s annoying to have to plan ahead and bring her a separate meal if we want to go out to eat or to a friend’s house or anywhere that isn’t home because I can’t be sure of ingredients anywhere else and would rather offend the host than have to clean up vomit later. It’s annoying to have to monitor my 4 year-old eating cereal and make sure that any dropped Cheerios are immediately picked up and thrown away to keep baby girl from picking them up and eating them.
I have come to a place where I can acknowledge and accept that it’s ok to be annoyed by these things. Yes, I know there are worse things. I know I have much to be grateful for (see above). But FPIES also does make things harder. I don’t blame my daughter, of course! But it’s ok to wish that she got to have a typical first experience of foods.
Since FPIES has become a factor of my family’s food, it will become a factor here.