Here we are, 7 months after her first vomiting episode, with a diagnosis: Kaylee has FPIES. Many of you might be wondering what the heck is FPIES. That was my first reaction when the pediatric nutritionist I first spoke with mentioned it. It is food protein induced enterocolitis syndrome. The short version, the protein in certain foods cause the gut to mistake it for toxins and the immune system starts the process of getting rid of it, while it is still in the digestive tract. For some kids the reaction is acute (vomiting within 1-4 hours of ingestion, lasting anywhere from 1hour up to 24 hours) and some have chronic reactions, so after multiple exposures, they can have diarrhea, rashes, upset stomachs etc.
For us, Kaylee has always had acute reactions. In the FPIES world, as of now, we would say she is acute to oats, rice, potatoes and grains. From what I have read so far, oats and rice seem to be pretty common triggers among the very small population of kids who have this condition. Another fun fact, this isn’t super common, so no much information is available. I have been researching on my own, joined a few Facebook groups which have been super helpful. I also recently found some moms on Instagram who are also sharing their journey with their children and FPIES. From those groups I found the FPIES handbook which I bought off Amazon (click here) So far this has been super helpful in understanding what it is and how to prepare for reactions.
Up til now, we have been able to deal with the reactions ourselves and keep Kaylee hydrated which is super important when having an acute reaction. The last two reactions she has had, had her vomiting bile for about 2 hours. We give her pedialyte and usually this helps. I have been reading though how some kids get to the point of hypovolemic shock which is super scary and requires a trip to the ER. Fingers crossed we don’t need to do that.
We already have a few safe foods which is a huge plus but now we are working on getting more foods on that list. Today we gave Kaylee watermelon. I gave her a small piece a few weeks ago and she was fine, so I am pretty sure today will be good as well. Once we know she passes, we will be able to move onto another food from the low risk list. I never really considered myself an anxious person. I mean I deal with a little bit of anxiety from life in general like everyone else does, but this journey has definitely put my anxiety to the test. I have to take deep breaths and try and relax whenever I think of the possibility of her getting sick. I think the feeling of helplessness when she does get sick is what I find the hardest. I can’t do anything to make her feel better and that as a mom is the hardest feeling. I wish I could be sick in her place.
I will take you along on this journey and keep you updated on how things go for us. I hope I can help other moms and dads who might be going through this FPIES journey. Its not an easy one but with more knowledge I hope I can help relieve some of the stress.
