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Had Dr appt yesterday, have more ?'s today Apr. 15th, 2008 7:35am
My 14 month old SWCAH daughter had an endo appt yesterday. I went in with a few questions and came out with more. Just a brief history on her, she tested negative on newborn screen, tested positive based on hormone levels at 10 days old (first adrenal crisis almost lost her), has had high BP since about 6 months, VERY minor virilization (if any) and no urological problems. She is a peanut, 18#'s and 27.5 inches. She was stuck at 17#'s for about 4 months. She eats like a grown man.
I went into the appt ready to present my case as to why I felt she was possibly being over suppressed. She is not growing, she has dropped from 50th%tile for height and weight to dropping off the chart. (I know that typically if you are oversuppressed your weight will increase but height will not, so that doesn't really make sense to me.) Also her hormone levels are WAY low when compared to the reccommended levels in the CAH Parents' Guide book. But my dr said that there is an equation they use to determine correct dosing of hydrocortisone for CAH kids and that she is being dosed correctly based on that equation. He said that it appears that children who are lower than reccommended based on this equation are the CAH children who tend to die (I have never heard of this, have any of you?). Well talking about her possibly dieing if we decrease that hydro shut me up and got me too flustered to push the fact that her numbers are way off. I don't know how much my Dr knows about CAH, he stated that typically they don't see CAH children who are both under height and under weight, but I believe there are many of you here who have that, right? I am just so confused!!!!!! I did request a DNA test to verify the diagnosis and the Dr wanted to do a Celiac test and test her thyroid to see if they could be contributing to her not growing. I don't know if or how any of you can help, I just wanted to get some input!! Thanks in advance!
