Pretty much my new full time job, for the time being at least, is obsessively Googling. Well, that plus methodically going through all of our food and throwing half of it out. And then doing that again and again as we discover more problem foods. And then aimlessly wandering the grocery store aisles wondering what we will eat. But still, it’s mostly the Googling.
For maybe a month now, I’ve spent every free brain moment thinking about FPIES and every free, or even not free, hand moment searching or reading up. (Sorry fellow SLC drivers for not hitting the gas when the light turns green because I’m buried in my phone.) The one advantage to this condition/disease/whatever being so understudied is it is somewhat possible to catch yourself up and I finally feel like I’m at a point where I know a decent amount.
Although I’m well on my way to a PhD in obsessive searching from Google University, I am not a medical, or any other type, of doctor. I’m just a crazy lady who wants to help her kids and I’ve read all I can. All of this is based on my understanding of others’ understanding so it might be totally wrong. But it still represents my entire knowledge base and is essentially a book report I’ve compiled after reading the Internet from cover to cover so I thought it might be useful to someone who is new to this. Here are a few terms I’ve learned for anyone who cares:
FPIES- Stands for Food Protein Induced Entercolitis Syndrome. You pronounce it F-Pies, like pies, the food that we can’t eat.
Trigger- This is what you call a food that a kid is allergic to. Or, in other words, a food that causes a reaction. You would say B’s triggers are dairy and soy. F’s triggers are…. well, everything pretty much, but so far dairy, soy, rice, corn, egg, apple, probably oat, and probably some more.
Food trial- This is when you introduce a new food at home that your kid has never had before, either through breast milk or directly. You do it slowly and painfully, starting with a small amount, and upping the “dose” for a few days until you are sure they can tolerate it.
Oral Food Challenge- This is when you give a kid one of their known trigger foods to test if they’ve outgrown it. Typically this is done when they are several years old so odds are they might have outgrown it. It is done in a hospital setting in case the kid has a bad reaction and needs immediate medical attention. More or less you give the kid a few bites and then sit there for the next 8 or so hours waiting for the fireworks. This is something that is very far from my mind as it’s years down the road for us, but our doc is trying to find a place for us to do this that has a bed and a TV and some space to play, so that’s pretty awesome of her.
Pass- When a kid tolerates a food through a food trial or oral food challenge. It’s pretty great news.
Fail- The opposite of pass and something that sucks.
Safe food- Something that a kid can and does eat regularly without a reaction. So for example, F’s safes through breast milk are peanuts, pears, squash, potatoes, etc.
Dose dependency- Again, all of this is so understudied, but based on some research and certainly anecdotal evidence, it appears that the severity of a reaction depends on the amount of the food ingested. This is sort of a good thing in that you can sloooowly introduce a food that you’re uncertain about and in so doing hopefully avoid a really bad reaction. Whereas a bowl of rice might earn a kid a trip to the hospital, a grain of rice would hopefully “just” result in a rather unpleasant day.
Threshold- Based on the above, there seems to be a threshold for the amount of food it takes to trigger a reaction. That magic amount varies based on the different trigger foods and for each kid. Ready for the major suckfest part? The threshold can decrease with repeated exposures. So say it took me eating 2 bowls of Rice Krispies for F to vomit 4 times, next time a small handful of the cereal might produce the same results, or even worse.
Accidental exposure- This is when a kid accidentally ingests one of their triggers. Sometimes it’s a good thing! If a 3 year old with milk FPIES accidentally eats a bite of regular pizza at a birthday party, first the parents panic completely, but then if the kid doesn’t have a reaction it’s cause for a celebration and a good reason to do keep trying dairy to see if they’ve outgrown it. Now it can be bad too because of the whole decreasing threshold thing. Repeated exposure to a trigger can lower the threshold required for a reaction which is not a good thing when you have a little baby or kid who likes to eat crumbs off the floor and put everything in their mouth.
Losing a food- Sort of related to all of the above threshold, repeated exposure mumbo jumbo. This is one that blew my mind and really really blows in general. Turns out it is possible for a kid to tolerate a food through breast milk, then ingest the food themselves, have a bad reaction, and then no longer be able to tolerate that food through breast milk. So then the mom loses a food from her diet, which is probably not something she can afford to do without some heartache. A version of this also happened to us. F was tolerating corn syrup through breast milk just fine, until I did two corn trials. Now he can’t go back to tolerating corn syrup. Should be an awesome Halloween. (You know, because that is our greatest worry right now.)
TED- This is a Total Elimination Diet. It means you cut as much as you can from your diet to try to get your kid totally symptom free. If it works then you can start adding foods back in one at a time. This is what I did when I ate only potatoes, squash, bananas, pears, coconut, and peanuts. A kid can have FPIES to any food so it’s sort of a game of luck/educated guessing to pick which foods to eat. And to some degree deciding what you can survive on. Plenty of people said I was crazy for doing that which may be sort of true but I honestly felt like I had no other options. But, there is always someone who has it worse and someone who has it better, and I’ve run across a few moms who actually survived on hypoallergenic toddler formula in order to get their kid to a baseline. That is something I don’t know if I could do so those ladies earn some sort of special maternal dedication medal.
FPIES Eyes- This is when you start to look at the world like a crazy, paranoid person. Not because you are actually either of those things (somewhat debatable in my case) but because the world is all of a sudden a terrifying place. I think I’m starting to experience this. We went to the state fair this weekend and there was popcorn littered on every inch of grass. F could not be put down anywhere and I made a mental note to myself that we definitely can’t take F there once he’s crawling. Then the other day B was playing with play-doh, and by playing I mean ripping it into tiny bits and throwing it around the room. I rushed to Google the ingredients, not only to see if I needed to move F to another room, but to see if we need to rid the house of Play-doh too before F is mobile.
The Internet- Not just for cat pictures it turns out. Shannon and Sheelah, thanks for the great advice to find an FPIES Facebook group. There is one and I think they might know more than the doctors at this point.