Re: Re: Re: Re: dosing schedule abstract.......very interesting...to Sandra
12/4/01 11:47 PM

I think sometimes when you ask questions of your child's Doctor's and they don't appeaI^IIE6g them in full and settling your mind to rest, you should keep asking them until your happy.  A lot of the time I made the big mistake of settling for answers that just did not in hindsight really settle my worries.  Years later as I am researching on line and educating myself, half the questions I asked about my child's condition were never answered honestly.  Not a one!  

Now I do not bother to ask the doctors that are providing the clinical assessments.  I just research the answers for myself or ask other parents who have actually been there and done that---and how they would do things differently.  You get a much more honest version of events.   It's not any harder to look for the answers yourself and if anything you come out a little better for it.  Doctors are just doctors I found.  They are not God and they are not my son's adrenal gland.  At the end of the day I will be the one that has to come home and dose this stuff---so I will do it how I feel it should be done--since half the Endo's who profess they are "Top CAH Experts" cannot decide amongst   themselves how the stuff should    be dosed correctly.  Looks like they will dispute it forever and a day actually I guess.  Much to the sufference of more children with CAH. 

 

 

 

Val
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