I beleive Carol would be the best one to post abstracts about the side effects of dex for both Mother and child.

Sometimes it is not always possible for mothers to do that due to the side effects which could possibly lead to loss of a child anyway. High blood pressure, oedema etc. Dex worsens such in addtion to the fact that they advocate very large doses in order that "some" of it will cross the placenta. They cannot tell how much crosses the placenta--they don’t tests the babies cortisol levels all the way through pregancy do they. So some babies may be being exposed to very large amounts and unfortunately this can effect growth, and physical as well as mental development that have far reaching effects well after birth from studies done.

What also I would have considered if I had contemplated another child with my husband was the fact that as soon as these people find out that the baby is a boy they STOP the dex treatment. Now that speaks volumes to me. It says a lot of things, and not just that they feel that the unknown effects of dex far exceed the effects of excess androgens where mental development or growth is concerned. For the little female fetus that has CAH that extra cortisol is probably not doing them much harm--or rather not as much harm as it would to a fetus that is not affected by CAH. I would consider that there is a 3 out of 4 chance that my next baby was going to be normal. That means a 75% chance--and that I could be exposing them to the side effects unnecessarily. If I had already had a little girl who was affected by CAH in outward appearance and I could see her growing and well apart from being different, I would have to ask myself what could POSSIBLY happen now for my next baby that I haven’t already dealt with. Baby girls can choose later if thy want surgery--some WERE given no CHOICE, but others haven’t been. there in lies the difference. Counselling when young and no surgery until the child feels it is appropriate is enough CHOICE for that child.

In fact we have a choice to NOT even risk exposing other children to CAH full stop, but what I would like to say here is---do we really know the long term effects to androgens on boys in utero nevermind girls. let’s not forget the little adrenal glands increasing in size possibly with that exposure and the damage on their mental health.

If your going to choose to hav a baby again after having a first child diagnosed with this condition, it is good to be able to say, "Well even if the next one does have CAH, I can cope with that because I have now crossed that bridge and know how bad it can get," so if we can take ourselves to that threshold, then why even say that a little CAH girl with this condition is not worthy of a life free from the possible effects of dexamethasone? Atleast when they are exposed to androgens, it is a natural process that without modern technology, we would frankly have no control over. Taking dexamethasone several times per day is a little different isn’t it--especially when there are absolutely NO guarantees that it will solve a.) the problem, or b.) do absolutely no damage whatsoever.

If I had the choice before me now, I think I would do exactly as Jennifer is doing. My reasons would be purely because of the above. I guess I am the sort of parent that can accept whatever happens now where CAH is concerned. I think using the boards has sort of helped me in that way. Even though I had not even contemplated another child, it is like learning about every aspect of CAH and that äny"aspect of it is acceptable eventually and can to me personally be an aspect I can have choices about. I can choose to accept any future child as they are. If I think that dex may affect a child on a mental level, I may look at things from a different perspective and think I would rather have a bright and intelligent daughter ( looking different----but as healthy as a boy with CAH!) than expose that daughter to large volumes of dex and have her intelligence and brain dulled by it somewhat or have a non- cah fetus’s growth seriously affected for NO reason. Since if I had already known about these things, I could be counselled to accept them "before" my child is born and prepare myself for this event.

At the same time if I chose dex therapy, it would certainly be with the knowledges of what it can do in FULL. That way I can prepare myself also for after the birth, should this affect my child later down the track.

I appreciate where you have been Aimee, but in a world where we are intending to make these things more acceptable in society--should they really matter and would they really have been so bad for you if surgery had not been performed as a child without your informed consent?

By informed consent I would mean fully understanding the implications for your sex life. You are you, bathed in androgens in your mothers uterus and surely life is or would not be so bad if they had not hacked too soon?

Your Friend