Donna, I posted a couple of weeks ago when my family had our DNA tested for a study that is going on for CAH. I volunteered to involve my whole family with the hopes that it will help in some small way to compare the CAH siblings with the non CAH siblings. The point of this post is that even at the institute that did the specific testing for CAH, my husband's CAH gene and my husband's CAH gene on my son's DNA came up undetected. After a couple of jokes about the paternity of my child, it was explained to us that most tests for CAH are run looking for the 8 most common strains of CAH. Then, if it doesn't come up under one of those, they run more extensive tests through a sequencer and eventually locate the strain of CAH. My husband's happened to be called "Exon 8 T Insertion" and it is a severe salt waisting form. My daughter came up as a carrier of the Exon 8 T Insertion rather than my CAH gene which is a very common one and is also a severe salt waisting form. This is where I realized that it was important for US to know this DNA information, because if a child is born with this or any of the other rare forms of CAH, they aren't included in the heel stick at the hospitals either. It would come back as CAH undetected. My daughter now knows that if she has a child she runs the risk of passing on this rare, not tested for CAH gene. This information would be invaluable to her and her offspring should she happen to marry the 1 in 47 that carries the CAH gene. If I were you, I would NOT take my child off the meds! I would have your doctor contact a DNA lab that has a sequencer that can handle testing for the less common forms of this disorder. Why would a doctor put a child at risk when there are other avenues available to them? I can give you the name of an absolutely wonderful genetics counselor who we worked with and who discovered our unique DNA situation. If you would like to get in touch with her you can email me and I will forward the information to you. Please, please speak with her before you agree to do anything of risk to your child. I know you must be scared, but I also know that once you talk to her you will know all you need to know to make the right choice for you and your child. I hope to hear from you soon. Lynn