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re: Had Dr appt yesterday, have more ?'s today Apr. 15th, 2008 8:48am
My daughter (SWCAH, now 5) is just like yours. She was low on the height and weight percentiles even tho she was oversuppressed (altho she did have a bit of a 'moonface'!). When she was first diagnosed, the doc based her daily dose of medicine on that equation you're talking about. However, it was *way* too much hydro for her based on her labs. Luckily my doc realized that equation is just a guideline and decreased her dosage. I think at one point she was taking ~ 7mg a day (about half of what her calculated dosage would have been) and she is most certainly not dead!
Your doc needs to be looking at your daughter's labs, not strictly adhering her dosage to that equation. While celiac and low thyroid levels could contribute to her slow growth, oversuppression certainly will lead to growth problems. If the labs indicate that she is oversuppressed, then she needs to be taking less hydrocortisone; just as if they were showing she was undersuppressed, she should take more. I think that you are on the ball requesting a DNA test to verify her CAH diagnosis.
You may want to consider enrolling your daughter in the NIH study (Natural History Study of Patients with Excess Androgens, # 06-CH-0011). My husband and I enrolled my daughter in this study, and the doctors are fantastic. There's no experimental drugs or anything like that, they are just tracking people whom have CAH to try to learn more about it. They perform DNA tests, do bloodwork, etc.- it might be a good way for you to get a second opinion about your daughter without offending your endo (just tell him you've enrolled in a study!). The offside is that you'd have to find time to travel to Bethesda, MD, but the NIH does pay for travel expenses.
