Julie,

If I may ask how high exactly was his potassium levels?  The reason I ask is for the fact that my daughter (who was born November 13, 2006) got up to 7.0, which according to the pediatrics that was considering critically high and her sodium levels were decreasing too.  They did nothing about it for me here and told me that she’ll be okay and I didnt have to go to the hospital.  You’re also very lucky that they have diagnosed him so early.  Ever since she has been born, I have had to take her into the pediatrics office to have them take her bloodwork since she has been born.  They think she may have it, but are still trying to decide I guess you can say.  The sad thing about this whole thing is I have SWCAH and you would think they would have just done the genetics test from the get go.  But they keep telling me that since I was on dexamethansone, I will have to wait for her to have accurate results.  Let me tell you its pretty frustrating when she’s almost 3 months old and I have yet to have a full diagnosis report yet. 

Good luck and I hope all works out a the endocrinologist.  One thing I suggest you ask is for some solu cortef (and if you do not know how to give a shot, maybe on how to give a shot) As well as if you do give him a shot in a time of crisis, I would ask  the doctor what are the signs for an adrenal crisis and what to look for in that case.  Also have him explain this disease to you in the best possible way he can.  My doctor when I was a child would always make diagrams and it would be things so simply for my little mind to handle. :-)  Although I never paid much attention because I didn’t want to, now that I have a new pediatric endocrinologist he had a wonderful diagram to explain it to me and it was so nice to look at.  It was a little better than the things I have read on the medical websites and things that I have been told my whole life.

Well talk to you later and congrats on the new baby boy!  ;-) His birthday is not too far from my daughters.  Crazy.

Liz