In response to your post about learning more from other parents then from MD’s & Nurses. I totally agree, I have been a Rn for 10 yrs, the first 6 in the Neonatal Intensive Care & last 4 in Pediatrics & I have only seen this once before & it was a young girl who was in crisis...so the full extent of CAH was not explored, just getting her stable & to the right hospital.
I had no clue about this at my daughters birth. All of my friends from work were clueless as well. I kept thinking how could I not know about this? Why didn’t they cover it in school? Why didn’t I go to training classes & learn about it? But honesty, there are so many disorders out there, you just can’t. Our Pediatric department RN’s are pretty much up to speed now, but that is b/c of me. I know a lot more than a lot of the physicians, but again...they are general pediatricians & don’t deal everyday with Endocrine issues. I am lucky, the MD’s in my daughters clinic are very open to learn more about CAH & ask me & her endo. questions. If they weren’t I would find another Pediatrician for both my girls. I don’t expect the doctor to have all the answers, but I do expect them to try & find the people they need to to get the answers.
Ok, I am rambling....sorry.
Jessica