Re: pregnant with CAH baby
4/8/00 4:14 PM
Hi Alan, I have two children, a 14 year old boy and an 8 year old girl with CAH 21 hydroxlase deficiency non salt wasting. In simpler terms, both my children have a mild version of CAH. I won't be a big help to you as my daughter did not suffer from ambiguous genitalia but trust me there will be many responses to your plea from very caring people who have gone through what you will go through once your daughter is born. The most important thing, in my opinion, is to get the most experienced pediatric endocrinologist you can find. Make sure it is someone who listens to your concerns no matter what they are. Make sure it is someone you can trust and respect. This disorder is rare so there aren't many doctors who are well versed in how to treat CAH most effectively. In a way you are 'lucky' to know in advance about your daughter's condition so that you may be more prepared. Many of the parents on this board, including myself, learned of our children's disorder when serious problems began to present themselves. Believe me Alan, I know how scary this is when you first find out about it. There is a lot to learn and some tears to shed but it will all be worth it and you will be able to handle it. It will become second nature to everyone in your family. CAH children can do everything any other child can do (sometimes better). My children are very bright, very athletic and all around nice kids (no bias here). Trust yourself and your family. You'll be fine. Stay tuned to this board. I am sure there will be many helpful responses. Good luck!
Liz
Rare Disease Search Engine, Homeschool Sites, Online Homeschool, Online Income, Ethical Adsense, Creative writing, Family Web Hosting, Christian Radio, Tulsa Parks