My daughter is 2 1/2 months old and we believe she has SWCAH.  When they were weaning her off the hydrocortisone, her potassium levels went up.  During that time she also had problems with really wet diapers.  I even had her in pampers (with the gel) and she would soil them and anything or anyone who was around at the time.  She also had a problem with really cold hands.  She was also like your daughter that she was eating, alert, and would sleep fine too.

Although I agree with Laura that sucking on her hands in the middle of the night could contribute to having cold hands.  My daughter has a problem with wanting her hands being out, she doesn’t like to be confined.  If you put her hands under a blanket, she will pop them out and start moving them all around.  That being said, they are always cold. 

But as for the wet diapers, we had some blood work done and they then had decided to also put her on Florinef.  The florinef really helped because she stopped having soiled diapers once it kicked in.  I would definitely contact her endocrinologist because if she is having soiled diapers, it may be for the fact that she needs to have her levels checked.  She may be losing salt and as they say, wherever salt goes, water follows.  I would also agree with the others about not worrying too much about this because it can be fixed.  Before you know it, she’ll be okay. 

 

Good luck and I hope you figure out the problem.  It’s crazy that the types of sleep patterns our children have because my daughter doesn’t go to sleep until about 10 or 11 and doesn’t wake up till about 4.  She used to go to bed about 10 and would wake up at 7 a.m.  But I have been trying to boost my milk production, so we’ve been cosleeping and she has been waking up when she smells the milk. 

If you have any questions, you can ask me anytime.  Good luck again..

 

Liz