Kristin,

Don’t worry - Kenny’s diagnostic levels were not very high at all.  CAH kids that are a tiny bit under-medicated will often have 17-OHPs that exceed 3000ng/dl.  To have those levels before any medication at all sounds like a dream to me!

I do have one word of warning.  Please don’t allow your endo to shoot for “normal” ranges for your son.  The research is clear that achieving “normal” ranges results in over-suppression.  Most folks are comfortable with about 200-1000ng/dl.  If bone age is a problem for Kenny, you’ll want to keep a tighter control.  Anything under 100ng/dl is a clear sign of too much medication or a poor dosing schedule.  Your son’s growth would probably slow significantly at this level.

Androgens (androstenedione or testosterone) are a different story.  We try to keep within normal reference ranges on these – preferably toward the top of the normal range.  Excess androgens will cause premature bone aging, which late-diagnosed kids frequently have problems with. 

Not many docs use 24-hour urine testing anymore (too much trouble, so they fear the parents won’t do it properly), but I’m a believer.  Instead of a snapshot of one moment in the day, you get a look at what happened over a 24-hour period.  Using urine testing has helped us to get a better handle on my girls’ medication needs.

It’ll take a while to feel comfortable with all of this, but it’ll happen.  Hang in there.

LauraK