Hi Megsmom,

It’s good you came here and you can draw strength and support from others who have experienced all of the range of scenarios that CAH can bring.

I’m assuming that your daughter had other signs of androgenisation, other than clitoromegaly before and at the time of diagnosis. It would be very unusual for a LOCAH girl to only have clitoromegaly (and pubic hair) without some of the other more visible signs such as acne, hirsutism and perhaps even advanced muscle mass.

As it is, clitoromegaly to the extent that you are suggesting that your daughter has it, is quite overt (but not impossible) for a LOCAH female. It probably suggests she carries a more severe mutation (classical or even a P30L mutation which can cause clitoromegaly in LOCAH females) on one allele.

IMHO I would think it would be more important at the moment, to reduce the visible (to other people) signs of LOCAH, such a I have mentioned above by getting her androgen levels down and then down the track a little way doing as ’buggs’ suggest and asking her how she feels about her clitoris.

There is a tremendous lot happening for your daughter at the moment and her clitoris may not even be an issue for her at present.

Also just make sure the doctors don’t give her too high a dose of corticosteroid in their attempt to bring down the androgens unless she will end up with a round red moon face and striae and these things are horrible for a young person who already has other things happening to them.

Please feel free to write to me:  megheart at bigpond.net.au