FPIES Syndrome and an ER visit

Miranda's test results came back on Friday. The only food of the 23 we tested that came back positive for an allergy was pineapple! I was stunned! Really, just pineapple? Apparently that is the only food of the tests (though we need to tests peanuts because I tested peanut butter not realizing they were not the same) that has that type of response. Unfortunately, it doesn't mean she's not "allergic" to all of the other foods, she just has a different response than an IgE response, and they aren't easy to test. Soooo, we still have to stay on the strict diet because all of the foods we tested still make her sick. The doctor then diagnosed her with FPIES Syndrome (Food Protein Induced Entercolitis Syndrome). It is rare and not very well understood but it is a non IgE mediated immune reaction to the gastrointestinal system to one or more specific foods commonly characterized by profuse vomiting and diarrhea.... Upon removing the problem foods all symptoms subside. Having FPIES does not proclude one from having other allergies/intolerances to food. Symptoms can range from mild increase in reflux and several days of runny stools to life threatening shock. In severe cases after repeatedly vomiting, the children often begin vomiting bile. It can also lead to shock when the child becomes severely dehydrated!
The doctor that saw Miranda on Friday was the best doctor I've seen so far. He was so nice, listened to what I had to say, played with Miranda, talked to me about things and actually understood what was going on. I felt relief when I left knowing that I can now understand why she vomits so often and has severe diarrhea, and that it is food related and there is a reason it isn't showing up on the food allergy tests. However, after coming home, I still have some questions, like why does she get hives and welts with some foods because that is not FPIES syndrome and the foods aren't showing up with IgE testing?
Last night Chad and I came home from a date and the baby sitter said the girls were good, Miranda ate tons of chicken, but had a hard time going to sleep and cried a lot. I went to bed and woke up to her screaming at midnight. She was COVERED from head to toe in vomit and her crib was smothered with it! Unfortunately, this is a little too common these days. I changed her and changed the bed sheets, but she continued to vomit, and vomit and vomit. I think she vomited a total of 50 times last night. She was to the point of projectile vomiting bile. I drove her to the ER where she continued to vomit bile in the car. I walked into the ER and nobody was there at the desk. Finally a nurse walked by and told me to sign in and she left for her lunch break. Nobody would listen to me as I tried to explain that she needed IV's right away to avoid going into shock. Finally, after watching her spew bile all over the waiting room, the security guard went and got me help. A nurse finally started checking me in and nobody knew what FPIES was. I was told by my doctor that I'd have to educate them and have them look it up, but they wouldn't listen to me. The nurse said, "So you say she's been vomiting but we haven't seen her do any of it." Um seriously, did you not see the floor, or our clothes all covered in neon yellow/green stuff? So, Miranda, on cue, vomited towards the nurse! That's my girl, you tell her!!! The nurse finally started listening and helping, and then Miranda blew out her diaper. They took us back to a room and Miranda was so dehydrated it took over 45 min and 3 attempts to get an IV line going. She was still fighting strong and it took 3 of us to hold her down....so that was good news, but she was limp most of the time. She continued to vomit and have 5 more huge blowouts with the scariest diapers I've ever seen. They took the stool samples for tests as the doctor had never seen anything like them before! Once she got rid of all the food in her body and the IV liquids went through her she perked up to her normal self. She went from violently ill to her perky self...and that is the life with FPIES. Unfortunately, she had a babysitter so I am not sure what triggered the reaction, but I'm guessing chicken isn't ok. Which is unfortunate because she LOVES chicken and would have it for every meal if she could. This is the third time she's vomited after chicken (but the only time this extreme). She eats chicken every day, but the only time's she has vomited when she has eat A LOT of chicken. So, I'll have to check with the doctor at our follow up appointment on Monday. For now, she's resting and I'm doing a serious amount of laundry! We spent from midnight to 7 in the morning dealing with this, and we are both exhausted. She kept begging at the hospital "Mommy, night night!" in between throwing up! She broke my little heart!
Oh, and the best news???? Most kids grow out of FPIES by 4-5. They may still have intolerances to these foods, but they shouldn't have such severe episodes. And???? they gave me a prescription for and EPI pen!!! I finally feel a little safer watching my child!