I'm so sorry. I have the same frustration when they look at you like they have no idea what you're talking about! It's such a helpless feeling to watch your kid suffer and it basically just has to run its course!
I understand how frustrating that can be. We have not had to go to the ER but I fear it may happen. I have read that some parents receive documents to take to the ER from their allergist and/or pediatrician. Does anyone have paper similar?
IAFFPE's website has a printout letter that you can take to the ER with you with info on Fpies and proper ER treatment for it. Great website.
We use a few different resources for the ER. Yes, we do have an ER letter-- the printout from the FPIES Foundation's Emergency resources page in addition to a customized one from the girls' GI that tells how to reach him if either of them end up in the ER and gives specific instruction to defer to him for management. In addition, I also bring along the ER care plan-- it spells out their triggers, specific tests that the doctors want the ER to run whenever they go in, gives a nice overview of FPIES, etc.-- and since B was an infant I have always carried a recent journal article or two. It may seem like a lot, but I have never felt like I had too much information--- I just keep copies in one of those gallon size hefty slider bags (keep it safe from vomit) inside of the ER bag. Here is the link tot he page that houses the ER resources-- you should check it out and see what fits best for your LO. I really hope this month has been a better month than the last one! http://fpiesfoundation.org/emergency-care/