I don't even know where to start with my questions.
My 4 year old daughter was diagnosed last week with SW-CAH. It has been a very interesting week. I think I made a mistake in asking the doctor too many questions on our first visit because on our second he asked me "how is your little internet search going." Since I'm a graduate student and manage a research lab, my "little internet search" is a lit review of the academic journals (Endocrinology, Endocrine Reviews, Molecular Endocrinology, Recent Progress in Hormone Research, The Journal of Endocrinology and Metabolism
) but I didn't correct him. I hate being patronized by him but it is far less important than getting the best treatment for my little girl.
My first and most urgent question relates to treatment.
It seems to me that the available research evidence suggests prednisone is not preferred for children. When he prescribed pediapred I asked about possible short term and long term side effects. He told me that there are none. One of the key points he emphasized and re-emphasized at our second visit was the failure of CAH patients to reach anything near full height (his words, not mine).
Does anyone have any insight on how I can approach this guy and get an alternative medication that has a lower correlation with low bone density and lower height in adulthood? I don't want to piss him off (more than I already have anyway) but don't want to give my child medication that seems to be used in adults but avoided in children.
Alternatively, am I totally off base here and I should just shut-up and obey.
Sincerely, Rebecca C
