My son’s first endo did not test for aldosterone so I don’t know what his levels would have been for the first year. She only tested sodium, potassium, 17OHP and andro. His sodium and potasssium stayed in the normal range or very close to it.

When he was almost a year old we switched endos. His second endo tested sodium, potassium, renin, 17OHP and ACTH. His renin levels have only been high once; after we reduced his florinef to 1/2 tablet (.05 mg) per day. We switched him back to 1 tablet a day and he has been fine since.

I don’t know the answer to Anne-Marie’s questions about a "mild version" of the deficiencies. It seems most of what I read, and what the endos tell me, insists you either have CAH or you don’t. I am convinced my son does. BUT, he sure does seem to have a mild version to me.

He is not prone to crisis, he does well on a low dose, he does not tend to dehydrate, and he easily crosses into oversuppression. However, his genetic testing confirms he has CAH, he has had periods of undersuppression when his levels went out of control, his bone age advanced and he grew quickly.

I am just not sure what to make of it all.

The more I get to know him, the more I believe there are variations in how a body reacts to the enzyme deficiency. For me, I do think of it in terms of "mild." Even if the current science doesn’t say that is possible, it has been our experience. 

He also seems very sensitive to medications. It has been quite interesting noticing the changes in him since we switched to circadian rythmn dosing 2 months ago. Our issue of most concern has always been his tendency to gain way too much weight.

During the spring, in the three months between his appts. he gained 10 pounds. He is only 5 years old and had not changed anything in his diet or activity level. Now, in the 2 months since we started circadian dosing, he has gained less than a pound. He is continuing to grow, is sleeping better and more, and is much less moody. For us, 4x a day dosing, smaller doses, at times matched better to his body clock appears to work better for him. He will have a blood draw in a couple of week and I am very curious to see how his levels are doing.

Sorry for going off on a tangent.