There seems to be a lack of teamwork here about CAH and then the dcotor this and that. No doc wants to send someone home that they don’t think is ready. This just a guy or gal that more than anything in the world doesn’t want to hurt any child . They follow training and plans from other docs - Most of the time those plans are right and sometimes they aren’t . The ER’s (3) are like home to me because of CAH and the rest of the conditions. They follow exactly what endo says - His name is in the computer along with      Wasn’t there but the main point of my post was to ask why - and not think of the ER staff as some distant peoples that always don’t get it and there are times they don’t get it so where is the protocol to help you help them do better. I’ve had adrenal crisis- gostly chalky palor to my skin, raging throwing up, being where I can’t even raise my arm up - then I’ve gotten extra cortisone ; ) My point is that the doctor( not GOD but a guy that devotes his life to caring for everyones children) here had a certain idea based on the presenting situation. Maybe they thought based on the factors at the time and how the child was reacting after the shot or yes maybe it was this particular crew first experience with CAH outside of a text book and they gave advice they would for another similar condition doesn’t matter brecause the Endo is the point person with this. My hospitals call automatic and know they know me loves and kisses but nope get those first year students heel away but that tall guy in the back ..sure he can come and run my history as long as you are here. It is a learning experience for them also and how can this experince be made better instead of always it’s the Docs this or that. The Docs best judgement that night at that specific time period was knock off the extra cortef for 24 hours - those orders aren’t written in stone and are supposed to change if symtoms don’t improve. I get a print out after my ER visit and it will state this is what we think your problem is, this is what we did for you, if these symtoms get worse or persist please don’t hesitate to come back to us, and always seek care from your primary or in our case w/ CAH issues the endo within 24 hours after your ER visit. My postings underscore what steps can be taken to make each future ER visit a more productive experience when it come to each specific person w/ CAH. No doc wants to hurt anyone....do they sometimes lack CAH knowledge and hide behide an emotional wall (big ego) becasue they are scared to admit that they as someone trusted to care for the health of the community don’t really know about CAH and don’t feel comfortable that they have in front of them a condition they don’t know about. Doesn’t everyone want to look like they know how to do their job in front of mothers and fathers? Unlike my primary doc that admitted that "Wow! you really have this" and that  " I scared him" plus another doc " I’ve been in pratice for eight years and I’ve never seen this" I love them both but they both really needed to learn about CAH .

Just would like to see that yeah this happened but we went to the Nurse Manager at the ER so next time it will flow like this. I question the  how and why all the time.

I’ve been there where if I didn’t speak up - I wouldn’t of had cortisone for my emergency surgery.

Like the one nurse said during my last hospital visit " so much to learn"

How can you guys make this better instead of havign the same happen? At my hospital they have a compter screen that xcomes up about each and every patient - the time before at another ER in the district and the nurse told me that I ...little nuttin me could add anything that I needed to the page because it was mine and it was my link to direct the doctors to try their best to help me. 

I added the other posts becasue they were specific that even with the infection to knock off the stress doses  and I’m sure if i felt worse then that direction would of been changed. Medicine changes jsut like that - I remember another time I was discharged from the ER feeling pretty good ...with being hydrated and having extra cortiosne - I wanted to leave but I ended up vomiting like crazy in the parking lot and one of the nurses saw me and helped me back in - I can’t leave those places....so might as well make it a comfortable place where I try to understansd and trust that they will do their best to figure out CAH and the rest. It doesn’t have to be a dificult experience or the doctor shouda ...I’m trying to see it like teamwork all the way around to where the doctors did there besta. God forbide the time if any one of us has to go to the ER and nobody can speak for us - medic alert is supper but i also would like to to know CAH from case experince.

Hey got pizza for the ER plus info about CAH. The ER’s were I go are like family ..do they always know about cah ...no but they want to because not treating the right way is bad for business after awhile.

i think waht a postive experince to be able to go to the ER  on a slow day with calling for permission being able to bring pizza and maybe beanie babie for the nurses thus when you have to go in for something you are now seeing community family.