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Wednesday, January 26, 2011

FPIES: Pie of Doom

Sometimes the title of my blog is a clever, sarcastic guise for how much my life really SUXX. (And yes, that's with TWO CAPITAL Xs, just so we're clear.)

Okay, my life doesn't really suck. We all have our trials. We all have to face something that everyone else, when they look at us, thinks to themselves, "Oh my gosh, I'm sooooo glad I don't have to deal with that!" Right? So, I will just go ahead and tell y'all what you are glad you don't have of mine. It's called FPIES.

FPIES stands for Food Protein-Induced Enterocolitis Syndrome. And I actually don't have it myself, but my 4-year-old son does, and its the worst thing EVER. Children with FPIES cant digest certain foods, so their bodies react by profuse vomiting and lethargy that lasts for days. The food can be anything (each FPIES kid has his own individual triggers) and just a miniscule amount (as in, can't see it without a microscope) will set off a reaction. Worse, the reaction won't occur until anywhere between 5 and 12 or even 24 hours later, so it's pretty freaking impossible to figure out which food was the culprit.

I try really hard to be positive about this most of the time, but right now, as I sit next to my son who is passed out on the couch for the bazillionth time after puking all day over some sort of mysterious food trigger that I can't figure out, I am going to take this opportunity to be bitter. BITTER! BITTER! BIIIIIIITTERRRRRRRR!!!

My son's FPIES triggers are soy, oats, possibly rice, and who knows what else, because he still gets sick even when we try to prohibit these foods from his diet. You might think it's not a big deal to remove these foods from someone's diet. Here is a non-conclusive list of foods he cannot eat that you might be surprised about:
  • All breads
  • All cereals except Kellogg's Raisin Bran
  • All crackers
  • All pasta
  • Most conventional meats, even raw meat
  • Sauce packets
  • Mayonnaise, BBQ sauce, salad dressings, etc.
  • Chocolate
  • Some juices (Minute maid, Simply Orange Juice to name a couple)
  • Pretty much any processed food you can think of, and any canned or pre-packaged foods that have soy, oats, or rice in the same facility--many times this is not mentioned on the label (especially where oats or rice is concerned because, really, who is allergic to oats or rice?)
Also, I have suspicions that tocopherols, mono-and diglycerides, and sodium lactate are all preservatives that are derived from soy. There are most likely over preservatives derived from soy as well.

Not only is it devastating to watch my son in this vomiting, catatonic state so often (about 2-4 times a month), but here are some other ways that FPIES limits our life:
  • We can't go on vacations, as traveling anywhere with our son means traveling with our own stash of food (most of it needing to be refrigerated and/or bought from special stores), as well as our own pots and pans because cross-contamination is just as harmful as if he ate the food itself
  • Eating out is stressful, since we have to bring a cooler with us and make sure our hands are thoroughly washed whenever we handle his food or something he might touch (if that's not hard enough, we now have to make sure his baby sister's hands are also washed, and you know how hard it is to keep a toddler's hands clean)
  • I am having a heck of a time coming up with enough food recipes that we can all eat that don't take all day to prepare from scratch
  • I can't come up with enough foods to fill our 72-hour emergency kits, let alone food storage
  • I am planning on homeschooling him until he (hopefully) grows out of this, because there is no way I can trust his school environment to be safe (this is what could happen: he touches a crumb of another kid's bread on the lunch table, licks his finger a few minutes later, and is out of school for three days)
So listen: I am grateful because I know there are worse things out there plaguing the lives of young children--life-threatening things that break my heart just thinking about them. And I am grateful FPIES is not life-threatening (though I imagine if he ate a whole lot of soy on accident--like a piece of bread, for instance--he would certainly end up in the ER). But right now, listening to his painful moaning and knowing there is nothing I can do to fix it--and maybe nothing I can do to stop it from happening again next week, as I still don't know what caused this episode--all I can think of is SUXX, SUXX, SUXX!!!


  1. I will tell you that sounds like a small version of Hell! No chocolate, no candy, no fun outings, no birthday parties. I have a friend with a daughter with PKU. and same thing (only it causes brain damage to injest). She has the hardest time. No eating out, no family parties that are relaxing and if her girl accidentally eats something at primary its a nightmare. I hope he grows out of soon!

  2. ugh, so sorry friend! My heart breaks for you and sweet Collin-boy! I was so hoping that he was turning a corner and "outgrowing it" Hang in there!! You are an incredible mom and woman for helping him though this. Your blessings await you in heaven 100 fold! You are a saint. I miss you tons, you are awesome!!

  3. Oh Lisa! I am so sorry. You are right-even if you can imagine that worse things happen to other children, the only thing that matters is that YOUR CHILD IS SUFFERING. And that is sadder than anything. I have a good solution. Move to Texas.

  4. Oh my! I'm so sorry!! I've been thinking about you because there are two families in my ward with small children with SERIOUS food allergies. Lots of them.
    You are such a trooper... it's so hard to watch our children suffer, especially when we feel helpless.