I also wrote the question about SSI, but I forgot to say that I am new to the CAH community.  My son who was born Nov. 7 2006 was diagnosed with SWCAH when the New born screening results came back.  It was a shock to my husband and I.  The day we found out I was back in the hospital after being home for only two days with my new baby boy, my gull bladder was having problems and causing me a lot of pain and a high temp.  I was actually being release from the hospital when the pediatrician called and said that they were going to have to take my son by ambulance to the children’s hospital because his potassium was critically high and his salt was very low.  At least I was then able to go with him.  We spent 2 nights at the hospital and then we were sent home.  He was again admitted a few weeks later for just a over night stay because things still just were not right.  We have been doing better now.  It is still a little overwhelming. 

We also have a 2 year old son (he may contribute to the overwhelming part) who does not have CAH.  In fact my family nor my husbands has ever even heard of this before.  But I guess that’s normal since it is so rare.  We have our next appointment on Tuesday if any one has any suggestions of questions we should ask our doctor it would be great to hear them.

Also I would just like to say, that it would be really great to have someone to  talk to who knows what I am going through and could give me some advice. 

Thank you so much,

Julie