I also posted this on the late onset board:

 

My 3 month old son has recently been diagnosed with an aldostorone deficiency.  Due to this we had some blood work done on my 2 year old son who has had a long history of failure to thrive issues (he has been tested for every GI disorder under the sun).  His labs came back with elevated ACTH so they want to do additional testing to see if he has low Cortisol levels.  His doc stated that if he is found to have NCCAH, then there is no way that my youngest could have just the aldostorone defic. even though he previously had his Cortisol levels checked (he spent a 1 1/2 in the NICU due to low sodium levels) and they came back normal. 

Is there anyone that has a child or children with NCCAH that can share there experiences with me?  I am pretty confidien that given my 3 month old’s situation that my 2 year old also either the Aldostorone Def or CAH.  Is it comman with NCCAH do be more def in Aldostorone than Cortisol?  Also, if my oldest who is only 21 llbs but average in his height is diag. as CAH, how quickly do you see the effects of the meds?  With my younger he is getting a daily dose of Florineff and sodium supplements and started to put on weight almost right away. 

Sorry for being so lengthy, but I am a very worried mom and just want my oldest to get the treatment he needs.  Thanks in advance for any info.

Gwen