Saturday, July 24, 2010

Come on already! Just spit it out. What is FPIES?

For your reading pleasure, I have spent all sorts of time linking the best FPIES info I could find online to this blog so, for the most detailed, medical, official information on FPIES, read those. For those of you not obsessed with my kiddo's medical condition (dreaming about it at night, researching non -stop, bothering doctors via phone and email... wait, that's just me), here's the down and dirty.

FPIES stands for Food Protein Induced Entercolitis Syndrome. (I know that means nothing to you. Not long ago it meant nothing to me either.) FPIES is on the furthest end of the food intolerance spectrum. Some people are lactose intolerant. These people can't digest dairy products because they lack umm.... well, they lack something enabling them to break down and digest dairy. I'm not lactose intolerant so I don't know what it is, but doctors do. Other people live gluten free because they also lack something that doctors could tell you all about which enables them to break down and digest gluten. If these people eat the foods they shouldn't, my understanding is that they feel pretty miserable: gas, reflux, cramps, rashes, diarrhea and/or blood in their stool (I don't think I'll ever post without mentioning poop or vomit).

FPIES is kinda like those things but, instead of FPIES kids reacting to dairy or wheat or soy, they react to proteins. Protein is pretty much in everything we eat. When an FPIES kid eats food they shouldn't they might have some or all of the above reactions but, in addition, their body tends to reject the food. Sustained, violent, projectile vomiting. (There is a very graphic link to a YouTube video of a little boy having an FPIES reaction if you REALLY feel the need to see this). Some kids, like Ginny, vomit until they're in shock. Unlike the other food intolerances (spell check doesn't think that 'intolerances' is a word, by the way), doctors can't tell you all about why this happens. There is shockingly little information available, appallingly little awareness in the medical community and endless conflicting opinions on every aspect of this beast. As a matter of fact, the only way to diagnose FPIES is by observing reactions (and going through the tests to rule out other conditions). Fun fun fun. But there is one good thing, one VERY GOOD THING about FPIES and it is this... Kids grow out of it. It might take 3 or 4 or 6 years, but they do grow out of it.

Tangent (or is this important?): FPIES is not an allergy. Food allergies are very different from a food intolerance. I've included links that give overviews of both. Just don't think 'allergy.' It will confuse you. I'm not even sure why I mentioned it here because now that little kernel is stuck in your brain. Forget you read this. Don't think allergy. DON'T. THINK. ALLERGY. This tangent will self destruct.

So, once you know your kid has FPIES, you're scared of all food because it all has protein. Now that Ginny can crawl I find myself vacuuming constantly, afraid she'll find some crumb and end up back in the ER. And the only way to test for FPIES 'trigger foods' at this time (although we have hope for patch testing - again, check the links for more info) is to do a food trial. And really, if we just had to food trial one thing, I could do it. I don't ever want to see Ginny in shock again, but I could do it. The catch is, as I mentioned before, protein is in EVERYTHING and FPIES kids don't just have one trigger food - some have a dozen or more. There are, of course, the big scary ones - milk, eggs, soy, wheat, rice - but loads of FPIES kids react to poultry, oats, corn, bananas, blueberries, sweet potatoes... you name it, it's made them vomit. Thus far, no one has figured out a rhyme or reason to what or why. Food 'families' tend to bring about similar reactions (i.e. all poultry or all legumes, etc.) but that's about it.

Here I think it's important to reiterate that, in between reactions, Ginny was fine and is now fine. She can't eat anything but breast milk, but for right now, that's not a problem. She's still growing as she should be and hitting all her developmental milestones. We're very lucky. Major FPIES reactions (vomiting until you're in shock) don't happen through breast milk and Ginny (smart kiddo) rejected formula every time we ever tried to give it to her. Kids who were formula fed from day one and have FPIES have had some real problems (can you imagine a newborn going through this, rejecting formula?). And, to be honest, lots of FPIES kids, even those who are breast fed, can have lots of problems. After a full blown FPIES reaction, kids generally stop gaining weight for awhile and may even lose weight. Some kids begin to have problems absorbing nutrients all together. Hit too many trigger foods and a kid can end up associating eating with pain and simply reject food or, wait too long to feed your kid solid food and they end up in 'feeding therapy.' And that's all the tip of the iceberg...

So, what will we do with Ginny? Umm... hello? That's what this blog is all about. If I tell you now, why in the world would you keep reading? I'm going to keep you on the edge of your seats, remember?

1 comment:

  1. You've done a great job sharing the detail and doing it with a sense of humor! Love you...praying for you! mej