Hi Bonnie,

I have a 2 1/2 year old boy who has been on the pills (switched from liquid) for a little over 6 months. We have the opposite problem of you - in that he keeps getting his dose reduced and is still showing as oversuppressed. Here is some info that I have learned re: appropriate doses of hydrocortisone (Cortef).

1) There are many different degrees of severity of CAH. Some kids do great on a comparitively small dose of hydrocortisone, some are a large dose. In addition to the bloodwork, your child's dr. should be looking at growth (height and weight), pigmentation, genital development, etc. An undersuppressed child will have hyperpigmentation (more color, especially in creases of skin like the hand), rapid height increases, slow weight gain, lower appetite, possibly less energy. Some parents also have noticed moodiness. An oversuppressed child (too much Cortef) will show slow or no height gain, too much weight gain, increased energy, a slight hump on the back of the lower neck, increasesd appetite, and a "moon" face.

2) A good way to compare doses of hydrocortisone is to look at mg/m2/day. This is the milligrams of Cortef divided by the meters squared of body of the child, taken per day. This number allows you to compare "apples to apples" even though the heights and weights are different. For example, my son is almost 35 inches tall, weights 35 pounds. His m2 is .636. He is on 5mg of Cortef per day. 5 divided by .636 is 7.86 mg/m2/day. (As I said, we have the opposite proble, he is on quite a low dose and it worries me)

This might be a little more than you want to know. If you are interested, however, let me know and I can give you the address for a website that will calculate m2.

3) Johns Hopkins puts out a great informational booklet (you can find it at www.med.jhu.edu/pedendo/indext.html)  Here is a qoute from page 8

"Cortisol Treatment. The oral preparation available include Cortef tablets  . . . Because gastric acid destroys some of the oral cortisol, the treatment dose must be about twice that of normal production (15 - 30 mg per square meter of body surface area, every 24 hours). "

4) Another quote, from the New England Journal of Medicine, Dec 27, 1990 titled Seminars in Medicine of the Beth Israel Hospital, Boston. (Although this article is 10 years old now)

"Glucocorticoid replacement is usually accomplished with oral hydrocortisone.  . . . In patients with milder defects in 21 hydroxylase activity, satsifactory control can sometimes be achieved with physiologic doses of 12 to 15 mg of hydrocortisone per square meter of body surface area per day. Petients with more severe  defects, however, often require supra physiological doses (e.g. 25 mg/m2/day). . . Because of well known risks of excessive glococorticoid use, we are reluctant to exceed the dose of 25 mg/m2/day, even if the growth rate, bone maturation rate, and adrenal androgen secretion remain above normal.  However, higher doses are occasionally required if hydrocortisone metabolism is accelerated by antiseizure medication or other drugs, or if hydrocortisone absorbtion is impaired by gastrointestinal disease."

Again, this maybe more than you wanted to know. If so just disregard it. If not, hope it helps. Good luck.