Well, I wrote about a term paper’s worth of questions on this form last night, and I lost it when I pushed submit! So I think I’ll do this a few questions at a time...

Some background....Our SWCAH daughter (our first) was born on Oct. 20, 2006 and was tested for CAH after her ambiguous genitalia was noticed. Two days after my c-section, she was flown to the University of Michigan to get her medications figured out (they have the labs there to do all the tests - our hospital would have had to send everything out). We were there for four days and since we’ve been home everything has been pretty good. But, when our home nurse visited a few days ago, she said that our daughter had only gained 5 ounces over the past three weeks and should have gained more than double that. Up to that point, she had been gaining well. That just got me thinking that her weight gain could have something to do with her meds and I needed to learn more about her condition...and thankfully, I found this discussion board. So - my first question...

1) I need to learn a lot more about dosing! When we received our dosing instructions, they simply said to give a dose in the "morning", "afternoon" and "between 9 and 10pm". My daughter takes cortef - 1.25mg morn, 1.25mg afternoon, 2.5mg evening; fludrocortisone - .05mg morn, .1mg evening; and sodium chloride - 35meq given in breastmilk throughout the day. This worked fine when she was going to bed at midnight, but as her bedtime moved to 6:30-7:30 a few weeks ago, I called our endo to ask if it was OK to move her nighttime dose so she was getting it around 7 before she went to bed, then I didn’t have to wake her later. The endo’s nurse said "it’s fine as long as she’s getting her meds regularly." Then I read about circadian rhythms on this discussion board and realized that by giving her meds that early, she probably had not much left in her system when she started to need it at 3am. Not good! So the last few nights, I’ve been waking her between 11pm-12am to feed and give her large dose. She’ll then sleep until 6:30 or so and I give her morning dose (she sleeps again from 7:30-9:30 or so). Should I give her morning dose at 6:30, or wait until 9:30? And then how long should I wait to give the afternoon dose, keeping in mind that I’m giving the nighttime dose at 11 or 12? Or, if I instead start waking up at 3am to give her large dose, when would I then give her other two doses? I can’t believe this was never discussed with us in much more detail!

2) What have you experienced with the moods of your infants? Our daughter seems pretty fussy, and we’re wondering if it’s just her personality, her meds possibly affecting her stomach (anyone know about this? reflux?), her meds affecting her mood, or her seeming inability to take anything longer than a few 45 minute naps during the day?

3) What are some of your experiences with your infants...good or bad? How often have you had to give shots? How have they responded to sicknesses? We’re still keeping our daughter away from most people...how long is this necessary?

4) What are the signs/symptoms of over/undersuppression?

5) When we were at U of M, the doctors kept mentioning that we shouldn’t be surprised if our daughter exhibited masculine personality traits as she gets older (playing w/trucks, etc...) and possible homosexuality was implied. I think they wanted to assess our response to this "news", none of which actually matters to us at all. But we are curious - what are your SWCAH girls like? What have your experiences been in this area?

6) Am I correct in saying that hydrocortisone given orally reaches the maximum concentration in the body in 1-2 hours and that the half-life is approximately 1.5 hours?

OK, I think that’s about enough for now...thank you all for your responses! Your time is truly appreciated!