Dear Sandra,

I appreciate your kind words about our "terrible" experience with Dr. New, but, in fact, I culdn't be happier about the way things worked out. If things hadn't happened the way they did, I suppose I could still be spinning my wheels today, wondering what was wrong with my son. 

I know much is often said about the fact that Dr. New does not always have a great bedside manner, but I want to make it quite clear that it was not "personalities" or her "bedside manner" that was the problem, in our case.  I don't even have an opinion about her bedside manner, to tell you the truth, since---all told---I have ever only spent 20 minutes of my life in her company.  When we went to see her, I was not looking for a new best friend.  I was looking for medical expertise and the best possible treatment for my son.  I believed the PR and assumed that she was the person who would be best able to deliver it.  

Our problems did not arise out of a personality clash---they arose from the fact that she couldn't answer the medical questions that I posed for her....quite surprising since, like you, I was a  complete newcomer to CAH, at that time, and she was "the world expert."  My questions to her started out as just idle curiousity about why she made some of the treatment recommendations that she did (especially when they seemed to contradict much of what I  understood to be accepted practice).  Since she was the world expert, I assumed that she knew something that none of the other doctors knew, and I waited to be enlightened. 

What started out as innocent questions about dosing and testing---questions similar to what you are asking now---took on a different urgency, when my son's treatment fell apart before my eyes, after we had made the switch to her care.  In fact, I also asked the question about dosing 2X/day vs. 3X/day---four different times, and got four different answers.

We had started out with another ped. endocrinologist, who we actually liked quite a bit, but decided to make the change to Dr. New, assuming that we could do even better.  Under our original endocrinologist, our son did quite well.  After about 3 months with Dr. New, though, he became completely out of control and---I started to suspect---severely undersuppressed, though I was reassured that his "numbers" were just fine.  With a little bit of persistence and a lot of luck, however, we ended up discovering a medication calculation error which showed that he was getting exactly HALF of his intended dose.  The key bit of evidence was a number contained in a letter that we received from Dr. New, herself----I suppose I should thank her for giving me the proof that I needed to support my contentions---in writing, and with her signature attached to it. 

I am sure Dr. Su is lovely....actually, I also liked the doctor we worked with, while we were at Cornell.  What concerned me, however, was that, after asking the dosing question 4 different times, I realized that she didn't know the answer---her final response to me was a worried look, and a suggestion that I ask it directly of Dr. New. It wasn't a "trick" question, and I wasn't trying to be a pain in the butt, it was just that, after thinking over each of the previous responses, I realized that the answers left me with more questions than I began with. 

I have no desire to burst anyone's bubble about Dr. New---it is incredibly seductive when the world expert, herself, delivers a favorable prognosis for your child, after you've just received the worst news of your life.  Unfortunately for us, she wasn't able to deliver on her promises, but like I said, I hope that our experience with her was an anomaly. I truly hope that you'll have better luck. 

Sincerely,

Carol