The effects of a food reaction for an FPIES child?
Vomiting, diarrhea and dehydration leading to possible shock symptoms, for starters...
The effects of FPIES for me?
Although the list is long, the worst of it is the paranoia. I am paranoid. After having friends over I spent a ridiculous amount of time sweeping and vacuuming every corner of our home. I am paranoid that people think I am ridiculously paranoid. I am embarrassed and constantly apologizing for cleaning up food on our floor, or moving their kid's food further away from mine at the table, and moving their kid’s snack trap up to a higher shelf where mine can’t reach it.
The effects of FPIES for Ellie?
She’s paranoid too. She happily grabs ‘her’ vacuum cleaner (the small dust buster-like vacuum that we have) to help me attack every last crumb to keep her little sister safe.
Growing up too fast. Ellie spends an inordinate amount of time pretending that her stuffed animals are sick and often, throwing up. She lines up plastic cups for them to puke into, one after another. Sometimes, they throw up so much that they have to go to the hospital. She is simply re-enacting what has been a part of her life, I know, but it’s disturbing to see how blasé she can be about this. Ellie has been to the ER twice with Ginny for FPIES reactions and once with Ginny after she tumbled down some stairs. Ellie calmly waved goodbye once as I took Ginny to get some stitches after a fall at a friend’s house. She acknowledges the ER when we drive by. Ellie knows which foods are safe for Ginny and got very upset when I fed her watermelon recently, even as I tried to explain that we were trying a new food. The understanding she has of all of this is well beyond her 3.5 years.
Fear. Recently, Ellie had a friend over and that friend got sick while she was here; vomiting repeatedly before her parents arrived to pick her up. It was the flu, but Ellie was in hysterics, certain that the little girl was headed to the ER, knowing that an ER trip for a puking kid is long and not at all fun.
The effects of FPIES for Ginny?
Again, the list is long. Although the health issues and potential issues seem like they should be at the top of the list, the worst and most encompassing of it all, in my book, is the lack of normality. I find it INSANE that she loves to say ‘cookie’ and points to the little table of snacks that we see as we arrive at Ellie’s preschool 3 days a week, yet she cannot eat a cookie. My heart breaks each time she daintily picks up a tiny piece of something from the floor and hands it to me saying, “Here you go!” Shouldn’t kids try to put everything in their mouths? I doubt they should be worrying over every speck on the floor like my kid does. And I desperately want her to get to eat what her friends are eating – that special, delicately frosted, butterfly cookie that the café has for spring time. She doesn’t even ask.
All life experiences change us and shape us. Life is change. What doesn't kill you makes you stronger. I know all that. I get it. Truly, these effects on our life are small. Other families certainly have it worse. Still, it really bugs me that FPIES gets to shape my kids this way – that it gets to shape me. I have to believe that we’ll all come out stronger and better equipped at the end. I have to believe that, but it still makes me sad.
