Re: To: Sandra
12/6/01 10:17 AM
I feel your frustration. It is so hard to know which is the right doctor for you and your child. It is a scary business entrusting your child's health care to another human being. The best thing to do is educate yourself to the best of your ability, stay abreast of current issues, "listen" to your child's behavior and be an aggressive advocate for the well being of your child. Remember, everyone has a story to tell. Your's will be unique to you and your family. I have also had issues with Dr. New and did get frustrated at times. Now that we are with Dr. Su (as are you), we have found an open line of communication, a common sense approach to treatment which was individualized for my child (3xs a day dosing) and a person who is not afraid to say "you have a good idea" or "I trust your instincts as a Mom". We are in the Growth Hormone Study Program headed up by Dr. New. I was sent there after the Chief of Ped Endo that our son had been with since birth, failed to pick up on the fact that my son's meds (bad cortef) weren't working for over a year and he was near death. He had begun going into puberty at 4 years of age and his bones had aged to that of a 9 year old. Despite constant phone calls from me and all my "maternal instincts", I was told that it had nothing to do with CAH. My husband finally insisted that we get off the liquid and told the endo to write a script for the pill. He got very nervous and wrote a script and handed it to my husband. My husband (being able to calculate quite rapidly in his head) pointed out to the endo that it was the wrong conversion. The endo then left the room. I heard the calculator going and he re-entered the room with another script in hand. It too was incorrect. My husband then told the endo what it should be and, low and behold, the endo simply wrote down what he had said and gave it to us. Needless to say, we ran out of there and sent my son's files to Dr. Pang where we were told he was less than two days away from death. When we called the (very high profile) Hospital to complain about this, we too were given the "cover your butt" treatment and heard many different stories. We asked that my son's care be transferred to another doctor. I spoke with a few of his younger colleagues there and they each told me that they weren't willing to usurp his athority as he was "The Chief of Pediatrics" and that would be a bit awkward but they would "keep a look out over his shoulder". When I expressed my feelings over this admittedly ridiculous suggestion, I, like Carol, was told I was free to seek treatment elsewhere. To me this was unacceptable. Shouldn't my son's comfort level and health come first, not the egos of these health care professionals? Anyway, it goes on and on from there. My point, and I do have one, is that the only real way to help yourself feel comfortable that you are getting the proper treatment for your child is education. Knowledge is key! Carol's and my story are a perfect example of that. She is currently happy being treated by her endo at the very same hospital that I had such a terrible time with and I am vice versa. Go figure.(:>) Feel free to email me anytime.
LynnT
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