Nat,

 

First I would also like to welcome you to this board and I am thankful that parents are taking inituitive to figure out what their children are dealing with.  Having a parent whom supports them and is trying to deal with this situation by learning an educational background.  I wish you good luck with this and I hope that you’ll find comfort knowing that your twins will be okay if you provide them with the proper love and care. 

I was diagnosed with CAH at 2 weeks old at my pediatricians appointment.  They noticed that my vaginal opening was closed over and that my clitoris was enlarged.  The Doctor believed that I had an adrenal problem and they later tested me for this disease.  They later found out that I did in fact have SWCAH.  Fortunately for me I have had pretty good care when it comes to the first pediatric endocrinologist I had.  He regulated me real well.  Unfrotunately he retired and another pediatric endocrinologist came into the picture and hasnt been so friendly.  But from what I have read there are plenty of parents on here who have been lucky to have doctors who provide them with good care.

 I’m now a proud parent of a 2 month old, whom they are starting to believe she has SWCAH as well.   I’m very thankful to have her because I’ve never had real good periods and ovulation cycles, so I was surprised when I saw on the stick that I was pregnant.  I consider her a gift from God that she is here and that I was able to get pregnant.  As for her and the diagnosis, her hormone levels jumped real high while they were descreasing her on the steriod and it also made her lose her hair on the top of her hair because her testerone levels became high. 

I do not want to scare you because I am sure that you’ll find a really good pediatric endocrinologist.  I live in a pretty small area and we’re not so lucky considering we only have 1 here who specializes in Congenital Adrenal Hyperplasia.  Well I hope all works out for you and I would like to congradulate you on your twins.  It’s totally amazing to hear of twins being born, since they are so rare. 

 

Talk to you later and if you have any questions, email me at ebryan09@hotmail.com

 

Liz