FPIES Update

Previous post from Mighty Munchkin Maintenance.

Recently, I've received a few inquiries regarding FPIES. It seems that there are a number of parents out there with children that have FPIES, and while they are doing their best to avoid offending foods sometimes a trigger food is consumed. And then a trip to the Emergency Room is inevitable, but many ER's haven't heard of FPIES and don't know how to treat it.

Unfortunately, there's not much the ER can do. Our doctor has written a set of instructions to follow if Kaylee has consumed a trigger food. Basically it's a letter explaining Kaylee's condition and how he came to the diagnosis. Finally he states that if an episode occurs the ER should start IV fluids, as there isn't anything that can be done to stop an episode once the food has been consumed. Generally, the most dangerous aspect of the situation is severe dehydration. Dehydration is especially dangerous for little ones and can be life threatening.

I realize that some of you were probably hoping for more than IV fluids as a solution, which isn't even really a solution. I wish I had more to share. You would think that it would be standard procedure to start IV fluids on a baby/toddler who is obviously severely dehydrated. I'm not a medical professional so I'm not sure why that doesn't necessarily happen. When we took Kaylee to the ER during her first episode we didn't know what was causing it. Although it was clear she was dehydrated, the ER didn't offer us any fluids to even give her orally and sent us home before determining if she could even keep fluids down. We were very frustrated, and lucky that her reaction wasn't any worse. The allergist was appalled at the emergency room’s behavior as well. During her second episode, we didn't go to the ER (which is not recommended) because we didn’t think they would help, and this was before her allergist’s diagnosis. Both times we were fortunate that Kaylee hadn’t consumed a lot of soy. We were also lucky that the allergist was able to diagnose her right away after the second incident.

If your little one has FPIES, I’d suggest asking your doctor to write a letter explaining the condition and include a set of instructions for the ER. (I carry a copy of our letter in my purse.) If you can’t get a letter from your doctor, you may want to print FPIES information to have handy for the ER in case of an episode.