Hi Jenn,

When my son (he is now 7 months old) was four months old his 17 ohp went from 1200 up to 8500 in less than 3 weeks.  I did not ever notice the BO.  I have been told that when undersuppressed he will NOT gain weight but will grow in length very rapidly.  When undersuppresed my son was in the 50th percentile for weight and 90th percentile for height.  His previous endo. put him on 10 mg of cortef/day.  At 6 months his 17ohp was down to 297 but he had not grown AT ALL (not even 1 cm!!!)  and he was showing many other signs of oversuppression even though his 17ohp was not extremely low.  He dropped to the 50th percentile for height as well but did continue to gain weight.  After changing him to another endo. that would listen to me we added a small dose of florinef to his daily medication and we lowered his cortef down to 6.25mg per day.  This decrease was scary to me b/c I was worried that his 17ohp would soar again.  One months after this change in regimen his 17ohp is down to 76 so we are going to lower his cortef to 5 mg per day.  Adding the florinef has helped to control him so much better than a high dose of cortef alone without having all the negative side effects of too much steroid.  By the way, my son is also classified as a non-salt waster but his renins were always on the higher side of the normal range.  Our DNA showed that I carry the gene for non-salt wasting and my husband carries the salt wasting gene.  My son presents as a non-saltwaster but I think he has the potential to lose salt as do many "non-salt wasters".  I think his adrenals were working hard to pump out enough aldosterone to keep his salt in balance and this was causing a side effect of pumping out too much androgens as well. 

Is your son taking florinef or cortef only?  How much cortef does he take daily??  Do they always test his plasma renin?  Is it normal?? Was your son diagnosed from the newborn screen?  What state do you live in? 

This is all still very new too me and I am learning more all the time from the wonderfuly helpful people on this board.  I’m sure others can share some more knowledgable information.

If you want to e-mail me feel free.  It doesn’t seem that there are that many "non-salt wasters" out there.

All the very best to you and your son!!!!   Lisa