Hi Sandra,

What happened with Nicholas and the dose miscalculation was that he had been on a long-acting med (dexamethasone) prior to being switched to hydrocortisone by Dr. New.  When we first went to Cornell, we were told that, because they felt Nick to be well-controlled on his dose of dex, they would PURPOSEFULLY base his hc dose on his dex dose.   Unfortunately, they ended up using the wrong conversion factor, when trying to figure out the equivalencies, and ended up with exactly HALF of what they had intended. 

What happened, as a result, was that Nicholas started falling apart, after about two months, becoming   extremely irrational, moody, and violent.  Once he gave his dad a bloody nose and almost broke off the antenna of the car, just because it was time to take his friend home, after a playdate!  Another time, he tried to knock me down in the lobby of a movie theater, because I had no more quarters for a video game!  I could go on and on, with the craziness that he exhibited during this time....I was certain we were headed for the insane asylum.  And he also started to become physically ill---complaining of headaches and neckaches, which he had never done before, even prior to starting any sort of treatment.  His teachers noticed that he became noticeably withdrawn and introverted, and a few times, he was sent home, for just not "looking good."

I started out thinking that Nick's shocking behavior change was due to the emotional fallout from his  diagnosis and all the medical procedures that he had to undergo.  After a while, though---for a number of different reasons---I started to suspect that he was being underdosed.  It's a long story how things ended up coming together, but suffice to say, when I finally crunched through the numbers myself, I discovered that I was right!  The hc dose, that was meant to be the same as his dex dose, should have been TWICE as large!

Of course, I was upset when I found this out, but mostly I was extremely relieved, knowing that there was a logical explanation for the reason why my sweet, sensitive son had suddenly turned into a virtual Jekyll and Hyde.  Unfortunately, Dr. New refused to entertain the idea that anything they had done was wrong.  When presented with the evidence, after being notified by our fellow of my concerns, her response to me was (as I mentioned), "If you don't like what we are doing, why don't you leave?" 

You know, I was actually prepared to forgive an honest mistake---after all, we're all human, even doctors (LOL!!!)  What I couldn't forgive was the smoke screen she tried to throw around the situation.  In the  span of about 15 minutes, I must have counted 8-10 truths or untruths that she deliberately told, in order to cover her a**.  Among them was the contention that they had PURPOSEFULLY reduced Nick's dose because he was oversuppressed on the dex (a direct reversal of what I had been told and what had been stated in her letter!)  The rest I won't even go into, but I hope her nose has shrunk down to size, since that time.

As I said earlier, though, I am actually quite happy that things turned out the way that they did.  In a way, I'm glad Dr. New made it so easy for us to leave and never look back.  Like most people, I went to her--- wanting the best for my child---thinking that she was the "world expert." Even before things fell apart, though, I had already started getting these nagging feelings that, geez...was I missing something.??? I just didn't think that she was really all that good???  (Actually, I could write a book on all the reasons why I think that, but will get to bed, for now.)