I have a thirteen month old son who was diagnosed through the new born screening.  When he was about six month old his endo stopped all treatment, claiming that he was misdiagnosed and should really have NCCAH according to the genotype. 

He was responding very poorly, was constantly losing weight and was lethargic and almost lifeless.  After four long month he was finally restarted on Cortef and Florinoff but was continuing to fall off the growth chart and was way beyond age level cognitively. 

When his endo saw him again three month later she suggested I follow with a GI and apply to the "Board of Education" as she was convinced there was some other serious issues with the child that are unrelated to his CAH. 

It was that afternoon, when she got the results of his sodium and potassium, that it became obvious that they where way off track.  Taking it into account, it was not surprising that he was responding the way he did. 

We started supplementing him with salt tablets and he now continues to show drastic improvement in all areas, well, almost.  He is alert and full of excitement (he is busy unpacking and messing up, has an excellent sense to discover when there is water around and only yesterday he tried plugging the tape recorder wire into the outlet on the wall- don’t worry with three little boys my home is completely child safe.) and at our recent GI appointment the doctor couldn’t understand why I’m bringing a red cheeky baby (he is now pretty cushingoid), claiming that he is a failure to thrive- until he measured his length. 

Although he his gaining weight beautifully he hasn’t gained inches at all and is still way off the growth chart in height.  I’m seriously worrying if the period off treatment, in addition to inheriting the genes of a short father will not leave him permanently extremely short.  Your post above is not giving me much confidence either.  As a mother I am going through a lot for this child.  I’m doing all that I can and am spending much of my time and afford for him.  The rest is up to God and I can only hope and pray for the best.

Good luck

Risty