Hi Sharon,

I remember a conversation I had with Ann Carlson from Cornell. I had asked her what happened if my son, who is a SVCAH’er, every stopped his medications. She told me that they have seen many SVCAH men who came to them for fertility help because they had not taken their meds for a very long time. Sometimes for years.   They were not at death’s door. Some of the information I read suggested that SV and NC could live without medication. I think it really depends on your clinical history. If you have been in very stressful situations and never had a problem, chances are your body can handle more stress without meds than another CAH person. There are some CAH’ers that go into crisis when they get stung by a bee or hit in the head while playing. I think your clinical history will show you how you react. Now...I’m sure this is not a popular view with many. I also have to say that I would be terrified if my boys stopped taking their meds. They are only 2yr old  and 1 month old, so I still have a ways to go. My main concern now is to keep them healthy and try to make sure they get as much height as genetically possible. Once they are adults, it’s up to them to take care of themselves...even with my constant worry!!  Your doctor may be right...you may not need as much meds. CAH is such a spectrum that is hard to say what is good for one is good for all. Just try to find a doctor you trust and one that will listen to your concerns and ideas and work with you.

Sandra