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New to this--have a few queestions.. Mar. 6th, 2008 1:31pm
Hello all, My oldest daughter Indigo has just recently been diagnosed with non-classic CAH. She was also diagnosed with a hypothalamic hamartoma just over a year ago, which causes PP as well...She gets a monthly injection to suppress the PP, and now we are debating the issue to put her onto cortef. She is 6 1/2 with the bone age of 10 3/4yrs. Her endo wants to just start her on very low doses of cotef (2.5 mgs daily), and then adjusting the levels from there...I just get a little freaked out with the info about side effects, doubling doses, and adrenal crisis...Have any of you experienced anything bad from just low doses? How does a personsift through all the info and make the decision to treat--we aren't sure at this point if the CAH is pushing her height/growth or the PP. And I also have three younger children that have shown no symptoms to date--but discussed with endo whether to test for CAH on them. My hubby and I decided to go ahead and do so, had the bloodwork done, and then were told they would not test children under 18yrs unless they have symptoms. This seems strange because they now (as of April-in our area) screen newborns for CAH. I noticed that some of you have more than one child with CAH-did they all show signs before being tested and diagnosed?
