re: Second opinion
Nov. 1st, 2004   11:17pm

Your doctor shouldn’t take offense for a few reasons.  One, unless your doctor has all the experience that Dr. New has in dealing with CAH specific patients, he should want you to take the opportunity to have your daughter seen by someone who has dedicated their career to what your daughter has, specifically.  Two, like our doctor, she encouraged us to get involved with NIH, Cornell, and Johns Hopkins because you can possibly get free DNA tests and hear the latest from those actually researching what is coming up.  As well as out doctor not feeling too self- imporant that she actually does pick up the phone and call those who know more than she does at times.  You might want to know more about growth hormones, diet and excercise news, as well as any news about stem cells straight from those who know, or know who would know.  They might have available something that your daughter doesn’t already receive.  You might tell him that you want your daughter’s name on their "list" and your DNA in their "databank" in case it helps others  including your daughter in case she wants to be in on a study in the future.  Her name would already be there and give her a possible "in".  There are many ways to not say it is a second opinion and after the initial testing and results, you might be able to go back to your doctor and say "We learned this and this and this, and by the way....of course Cornell said you were right on track". 

I think if you can realistically afford to go, you should.  Otherwise, simply because you are already questioning whether to do it now,  you might wonder when your daughter gets older if you should have when you could have.  We have gone perhaps overboard with this but have talked to Cornell, NIH, and Dr. Migeon at Johns Hopkins to make sure our daughter was receiving the best care.  All three of them actually agreed with our daughter’s treatment other than early on when she was on a larger dose of florinef.  All agreed that was too much and our doctor listened to their reasoning and carefully lowered the dose.  You probably love your endo because he isn’t pretentious and actually cares.  If that is the case, then he shouldn’t mind at all.  Even if you just said " I went to this conference and listened to Dr. New.  There is an oppotunity for us to see her and I would like to talk to her so I know that our daughter has all avenues opened to her before she goes out on her own someday. "

God Bless,

RebeccaM

RebeccaM
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