hi sue

our son has cah nonclassic, he was actually picked up on a newborn screen test, but after having genetic testing we realized that he had nonclassic.  at three months the local doctors placed him on meds, after speaking with others, and doing some research myself.  we choose to take him to see dr. new in new york.  prior to seeing her, my son’s numbers were low also, so i talked the local doctor in letting him come off of his meds, that was 7 months ago.  (we still aren’t on any meds)  dr. new saw him in new york and said that our son didn’t need any meds, at this time.  so we just watch him and have labs done every 6 months.

the reason i tell you this whole story, is that there are alot of kids out there on meds that don’t have to be, they have nonclassic cah.  but most endos don’t know enough about treating a nonclassic cah child so they but them on meds anyway.  the numbers that new york is going by are the 17 ohp levels along with a panel, but as far as the 17ohp level they like to keep it between 300-1000 (on or off meds)  i am not sure what your daughter labs have been but there is a reference for you.  that is what we use at least.   i am not sure if you have had your daughter genetically tested, but if you find out that she carries the gene for nonclassic, that would be all the more reason to come off the meds.  there are lots of side effects of too much meds, even some doctors don’t tell you that.  the reason i know that is that my husband also has cah, and has been way overtreated through out the years.  so we are very caution not to have our son overtreated. 

i hope that sharing our story will help you and if you have anymore question. just ask.

take care and best wishes

tonya