I thought while we are trialing a new food now (pears) that I would post a bit about what our chronic reactions look like… Acute is more easy to spot with the vomiting right after ingestion or diarrhea 5hrs later, but with chronic it starts off not so bad, until you give more and more of the offending food and then eventually get full blown crappy (pun intended) reactions. For us, that means Micah will scream in pain for hours, sweat profusely, get a very bad acid burn rash on his little tush, diarrhea for days on end, reflux flare ups, and bad sleep habits. But this, this is what I see when I know the reaction is here:
This is a 1 minute video of a scream fest that can last up to 45-60 minutes. And during this whole time, he does not let us comfort/pick him up. It is so heartbreaking! I hate this for =him. I want to cuddle him, tell him it’s okay, tell him mommy will protect him from the bad guys (food) out there, but how? When even SNOW and WATER can make him sick?? If you’ve seen our growing list of fails, you know what I’m talking about a little bit, but did you know he is so sensitive, he needs a special kind of water (reverse osmosis or 1 hard to find very specific brand of bottled water) to make his formula with? He has also reacted to a puzzle piece, a board book page, a dust bunny he found under the rocking chair, etc. This is a constant battle for him. Micah VS The World, and right now, unfortunately, the world is winning 😦
If you want to help find a cure for FPIES, because as horrible as it is, there is also no found cure yet either. So any little amount donation can help end this horror for so many kids. Visit The FPIES Foundation and please consider giving even 1$ if possible. It would mean the world to me/Micah.