re: re: Is smallness in a child normal w/ swcah?
Jun. 3rd, 2005   10:59pm
My answer is no, not all CAH kids are small. My daughter was tiny, off the charts in height and weight. She slowly fell down and no one seemed too concerned except me. I asked on this board and did a lot of research about the circadium rhythm dosing of meds for CAH. WE presented it to our endo and she consulted some collegues and then said yes. Her biggest concern was compliance but she trusted us. Anyway, we were actually able to lower her overall daily dose this way at first and keep normal levels. By normal I do not mean normal to someone without CAH which her previous endo had been keeping her at. This was way too low for her. She had round puffy face and couldnít sleep or grow for that matter. Slowly her height increased up the percentiles not too fast but caught up to what she had been born at. My husband and I are both tall so this was by far more expected. She is 5 now and is staying with her 75% in height and weight. She is strong, muscular and thin. She looks great and feels great. Happy kid. Some people are more sensitive to the meds and have more side effects. For those I strongly recommend the circadium rhythm dosing schedule. Yes we get up at 3am and sometimes itís a pain. But I look at her and itís definately worth it. By the way we dose 5 times a day for Cortef: 3am, 7am, noon, 5pm, 10pm. Itís not all that difficult once we got used to it. We added the 10 pm last fall as she was growning so much it worried the endo but her levels have always been good and still are. We didnít increase her daily dose just spread it out more. Good luck. Julia
Julia S
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