I noticed several people have said their children have weight problems.  What can be done to try to prevent this from happening?  Right now, she is still being checked once a week but will be going to every two weeks once we get her blood pressure down.  Is the weight gain due to the meds? 

My two with CAH have always been well within normal ranges for weight, and only slightly below normal for height. We have noticed Jonathan is developing a greater appreciation for food, and will eat almost constantly, but we keep reminding him the CAH (or mds whichever it is that’s doing it) will make him hungry when he really doesn’t need to eat, so he’s never gotten to the point where it’s been a problem.

Also, for those of you with girls with CAH, what are your thoughts on surgery?  Should it be done sooner or later?  It has been recommended that she have her surgery between 9-12 months but I know some people say to wait until she can tell us how she feels.  Thoughts?

We decided to wait until Ginny is old enough to participate in the decision. That way she’s a part of it, and there’s a chance we’ll be able to take advantage of better medical techniques that might develop between now and then.