Hello,

I gave birth to a baby girl two months ago and she was diagnosed with SWCAH.  My husband and I have read, reread, and re-reread almost everything we can about it but there are so many questions and concerns we have that we are having trouble differentiating what is regular newborn issues and what has to do with CAH.  We have already freaked out a couple of times because we could not wake her up (even called the paramedics once but they have no clue as to what CAH is) but then she wakes up, screams, and then looks at us like "Um, I was sleeping, what are you doing?"  She was a screamer since day one, very alert, eyes as big as saucers.  In the NICU she was the "loud one" and we were always concerned because she turned the deepest shade of red and stiffened up completely quite often.  They diagnosed her because of the ambiguous genitalia but the labs got results as if she were a 3B and not the 17H type (think I differentiated right) and the day we were to bring her home she, I guess, had what is called a crises and an alert Dr. quickly just treted her as if she were 17H and she made it through fine.  We have taken her in a couple of times just to have her electrolytes tested because of the waking thing and they say she is fine (a little high on the potassium but salt is normal) the tests came back from the lab again (since they got it wrong here, they sent it to CA) and they confirmed 17H.  Now that I have rambled, my initial questions are:  How could I tell if she was having an adrenal crises?  How can I know for sure what kind of CAH she has since two tests were taken and they both were different?  What kinds of questions would be the most important to ask the Endocrinologist?  I ask her things like "Does she make ANY Cortisol?" Are there differnt levels of SW or are you giving meds based on weight and height? But she seems rather vague.  I am in Northern VA and can go to NIH or Johns Hopkins, would anyone suggest a second opinion?  We are in the process of deciding on whether or not to have our little girl have the operation that some seem to think is purely cosmetic, is it?  What about daycare?  Goodness, I am at a loss, so many questions, so many worries and my maternty leave will be up soon.  She is a beautiful blessing of a little girl and my faith is strong as well as my belief that we are living in a key time for research.  (I was amazed they cured the "bubble boy" recently. ) Anything is possible during these times and there are so many related Adrenal issues that might help with cures.  Where is the most updated Research for this, in other words, where do I keep my eyes peeled?  NIH is doing some great studies for medications to optimize growth but our little girl isn’t old enough for that yet.  Anyway, anyone in the same boat I am?  Anyone who won’t bite my head off if I decide to go ahead with the operation after I have studied the nerve loss.  Lots of angry people in here, understandably so, but I need to hear the positves as well.  Okay, my book is finished!