It was interesting to read the part about Mineralocorticoid replacement.

Mineralocorticoid use.
All classic CAH patients should be treated with fludrocortisone at diagnosis in the newborn period. Dosage requirements in early infancy range from 0.05–0.30 mg/d, whereas typical maintenance doses are 0.05–0.2 mg/d, depending on the sodium intake. Such therapy will reduce vasopressin and ACTH levels and lower the dosage of glucocorticoid required. The need for continuing mineralocorticoids should be assessed based on PRA and BP (22). Sodium chloride supplements are often needed in infancy, at 1–3 gm/d (17–51 mEq/d), distributed in several feedings (23).

Criteria for the diagnosis and treatment of NCCAH.

The dosage requirements seem to be very much less than the 100mcg that Ashley was on in the newborn period AND he even had sodium chloride added also.  100mcg I presume is the same as 0.1mg.  So the doses above of 0.05-0.30 mg/d appear considerably smaller.  Then for maintenance dose it ranges again from 0.05-0.2 md/d, which seems to contradict everything that I have read and been persistently told as a parent everytime I have asked WHY they do not raise the florinef dose.  Over and over again I was told that it did not need to be altered, and yet I know really deep down, that a baby would simply not need as much as an adult and that the florinef probably should be adjusted as kids grow.  It’s really annoying to say the least, because it is yet another thing that affects growth---too much in infancy---and then not enough in later childhood.  Which as far as I am concerned is what is occurring for Ashley basically in having had the same dose since birth.  I mean for all I know his dose could be perfect for him now, but may have been a tad too high when younger.  One thing is for sure, I am not so naive I think that it has been "Just Right" for him ALL the time the past 10 years.  But will Doctors really read these things and take a blind bit of notice?