Highly upset!

I am completely angry right now, and this is the only place I can think of to voice my disbelief. My husband and I just spent almost 7 hours in the ER with my 3 year old who had FPIES to milk and beef. He ate some non dairyicecream which turns out to"may contain trace amounts of milk protein". Ok, that's fine, that never bothers him. Well I think this time it did. Hours later he has severe stomach cramps, barely can stay away our walk. We call his dr. And she says take him to the ER. we see the nurses and dr and tells them about the food protein induced enterocolitis. Aka Fpies. They say F what?? The possibly allergy was never taken in to consideration. They poked, prodded, xrayed and everything else to my son from 12:30am to almost 7am. Then say they can't find anything. But I already told you!!!!!! Do now he is also in his bed when all he needed was probably an IV of fluid and sent home in 2 hours. This makes me so angry! My poor baby.
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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/

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