I really hate food trials. Emotionally I get worn out when we do them. I start a mental stopwatch and keep an eye on my daughter every time we start a new food…or retry a food she has had a reaction to in the past.
This week we re-tried rice. I decided to use a food product that had rice as a secondary ingredient, instead of going with straight rice. I don’t want to have to make a trip to the hospital during COVID-19 if I don’t HAVE to. I have medicine at home to control any vomiting and I know how to handle an FPIES reaction at home as long as it doesn’t lead to SHOCK. Which we have had happen before. We didn’t know anything about FPIES back them.
Anyways, for 2 days we increased her exposure to a cookie that has rice as an ingredient. The first day she seemed to be doing well. She was going poop a few more times than usual, but that could be ANYTHING.
So on day 2, I gave her 2 cookies. And she really enjoyed them, A LOT. But through the day she seemed a bit cranky. She would hide when she pooped. (She is still in diapers). Anyways the last 2 stools were gritty and acidic. She ended up with a horrible diaper rash. That is one sign of her stomach not liking SOMETHING she ate and the only NEW item introduced to her was the rice cookie. So I will be giving her some gut rest for a few days until we return to our normal output.
Once she is back to normal I will discuss starting the trial again to rule out a fluke reaction. If we get the same reaction we will consider it an acute fail, and we will retrial in another 6 months. Thankfully most kids outgrow FPIES but some don’t. The fact that she did not vomit everywhere …is comforting to me. It makes me think, maybe she will outgrow this eventually.