Hi Adina,

Yes, I know it is alot to take in at first. You will feel more comfortable with it soon. I promise. Once you get more information you will see that you and your daughter will be ok. SV stands for simple virilizer. In the classical form of CAH there are two types. The first is salt wasting and the second simple virilizing. The other form of CAH is the nonclassical kind or late onset.  This form is less severe and in some cases doesn't require any medication. Salt wasters, from what I have read, have the more severe form in that they are prone to have an adrenal crisis must faster than a simple virilizer. The classical CAH requires medication for life. Some argue that SV might not but that is a topic of discussion.

I'll email you my story. I know that you must feel so frustrated and questioning why....Don't feel like you are alone. I know I felt and am still dealing with many feelings.

As far as doctors. I chose to see Dr. New because she is supposedly the "world expert" on CAH. I had been referred by our pediatrician to one Dr. here in Houston and I changed after our first visit. Our personalities clashed. I am happier with the one I have now. I think my desire to see Dr. New is that I want my son to see the best. I want her opinion. I want him to be able to have a history with Dr. New for any future visits that might be necessary. I will still stay with our Dr. in Houston for now. I don't know what Dr. New will say. I will fill you in when I get back from my trip. 

As far as Doctors go, I have a friend in Dallas who really like her son's doctor. I can ask her for the Doctors name. I would say that you shouldn't cancel your move. You will find a good Dr. no matter where you are. Maybe you can interview one before you pick. You can call the Newborn Screening Program and speak to Carolyn Scruggs, RN. She can give you some names of Doctors in Dallas.  Her number is 800 422-2956. She can also send you out a packet of CAH information that can help you start learning more about CAH.  Some of the pediatric endocrinology consultants provided in the Cahoot CAH newsletter are Dr. Bryan Dickson, Perrin White, John Germack, Grace Tannin. They are all at the  Children's Edocrine Center 6300 Harry Hines Blvd # 1200 Dallas TX 75235. There is another one, Ellen Sher at 7777 Forest Lane Ste. B #300 Dallas Texas 75230.  the phone numbers were not provided but Carolyn should have them and information would too. You can always see Dr. New in New York. I think some send the bloodwork to her and make the occasional trip to New York. You will still need an endo locally for emergencies and maybe some visits.  I wouldn't  worry too much if your pediatrician doesn't have any experience with CAH. Most won't as it is very rare. I found a good pediatrician who doesn't have any other CAH patients but he is willing to learn. I tell him all the information I found and he reads up on it too. The endo send him all the information on my son's medications. He is very cautious and I like that. We only call him for regular pediatrician questions. All my other questions go to the endo.  I hope some of this helps. I will try to email you with my story tonight. I have my hands full with 3 boys! Feel free to email me whenever you like.

One last word of caution that was passed on to me. You will read a lot of information on this message. For right now don't  read everything. It will only confuse you and make you more upset. I know from experience. I'll email you more on this too. Take care and know that you will get through this tough time.

Sandra