Re: 17 OHP levels
6/12/00 12:06 PM
I have to agree with CAT's posting as well as those that encourage you to not back down from a doctor. It is so important to have open lines of communication. My 5 yr old son has CAH and has always been very well controlled. At his visit in April our endo called to increase his Cortef evening dose by 1/2tab 5 to 7.5. I informed her that my son had gotten sick shortly after the visit and wondered if this could have thrown his results off. She agreed that it could have. Unfortunatly this took a few days to connect with her so we had begun with the increasd dose, from the message she had left us. She had us wait 2 weeks and redue the tests locally, as she is about 1hr from our home. She called back to inform that his results were even higher and wanted us to follow through with the increase she previously prescribed. Of course we did but I asked her to explain what the results ment, what was the range of acceptable, and where my son had and currently was. This was the inforamtion provided: Up to 1000 is acceptable for CAH patients for the 17OHP. "Normal" patiens are below 50. My son had apparently always been 10 or close. The April results were 130 or 160 (can't remember) and the second results were 190. She agreed that they were well within the "acceptable range" HOWEVER, they were high for my son based on his 5yrs of history. My son has been with the same doctor since he was 4days old so she is well informed on his history. She felt that there was clearly something beginning to happen for him. She did agree that alot of doctors would probably not change his meds but she felt that she needed to treat based on what was "normal" for him. She believes that the longer a patient goes untreated the longer it takes and the harder it is to get them back under control. I personally agree with her and trust her totally. We have trusted her right from the start as she has always been very open to communication with us. I feel that when and ego gets in the way then a doctor is insucure that they may not know all the answeres and my risk mistreatment. My doctor has told me that "she needs to look into that and get me an answer". She can't know everything and is very willing to get us the answers when she doesn't. That to me is a great doctor. I have called her so many times I can't tell you and left messages on her office machine with questions. She has always called me back within a few days with my answers. She has even left me messages to page her because she didn't want to just leave me a message on the machine. She has many patients yet finds the time to call and check in sometimes between visits and has even spoken with my son on the phone. Our children are faced with many very personal situations, such as the physical exams so I think it is so very important for there to be a bond between the doctor and our children. I truely feel that my son has that. Good luck and please keep us posted. Judy
Judy
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