My 3 month old daughter, Loghyn, was diagnosed with SW-CAH when she was 5 days old.  Luckily they were checking her ’lytes often because of her ambiguous genitalia.  Since we brought her home she’s been on Pedia-pred and florinef along with 1 salt tablet per 8 ozs of formula that she drinks. 

My concern is the amount that she spits up!!  It’s nothing that would bother the mother of a non-CAH child . . . not actual vomiting . . . just wet burps (sometimes very wet!).  Sometimes a little more than others, but never anything to push me over the edge and make me wonder if she needs the solu-cortef injection, which we DO keep on hand for emergencies.  My real concern is how do I know how much of her meds she has kept down??  If she takes her meds in the am and then spits up some after she finishes the bottle, how much of her meds did she keep down?  Do I need to give her more?  Her endo said it’s pretty much a judgement call, but it’s so nerve wracking!!  All of her labs have come back good since she started on her meds . . . actually, we were over-surpressing, so her endo lowered her dose of pedia-pred.  But it still drives me crazy every time she spits up.  I don’t want to rush her growing up, but I can’t WAIT till she gets out of this spit-up phase!!

How do/did other mother’s deal with it??  Does anybody know how quickly the meds are absorbed into her system?  I’d love to get your input!