I’m sorry that you have had such a difficult time.

We live in Southern, NH and our Pediatrician is located 25 - 35 min south of us in Massachusetts as that is where we used to live.  We choose not to change.  However, our Endo is located at Children’s Hospital in Boston at least one hour away or longer depending on traffic.  I can only tell you how we have handled life and juggled the two offices.  I only deal with the Pedi for routine things although they are great when dealing with the CAH, especially one of them.  Believe it or not my son is 1 of about 4 - 5 patients with CAH in the office.  But that being said I deal primarily with our endo for the CAH.  I have several numbers to contact her or her hospital should I have a question.  I just call the page operator and ask for her.  If she is not on call I ask for the Endo on call.  I very very rarely have to wait for a call back and rather hold to be connected to the endo.  This is anytime day or night.  If you are dealing with an Endo at a children’s hospital I would find it hard to believe that you are not entitled to such access to them.  I have also learned to trust myself and my knowledge, although I feel it to be much less than many on this board.  My endo has always said not to stress dose for a fever unless it was 101 or higher.  I just keep track of when I stress dose so I can let her know each visit as she is very interested in knowing when and why and for how long.  Of course she has also advised to stress dose for broken bones or the like.  My son broke his baby toe sever months ago and I stress dosed for two dosings but didn’t feel it necessary for the third.  When we saw her a few weeks later she agreed that we did the correct thing.  I just try to stay calm and tell myself this is our life and I don’t want to stress him out every time he gets sick or hurt.  As with any child their parents know them better than anyone, even the best of doctors.  Learn to trust yourself and your gut feelings / instincts and don’t back away from that.