Hi Lisa,

I am 51 years old and was diagnosed with SWCAH (adrenogenital syndrome) when I was only 12 days old. I become Dr. New's patient when she first arrived at New York Hospital back in 1962 and I only switched doctors a couple of years ago. Although Dr. New is strong on research her understanding of the psychological impact of the treatment of CAH in my opinion was sadly lacking.  I think it is quite possible that your son's psychological problems are contributing to his control difficulties.

As Carol has pointed out, under normal conditions the body produces cortisol in a fairly constant and preditable range and will stop producing more once this requirement is met. However, when a person is under continuous long term stress be it physical or "only" psychological the adrenal glands are constantly being stimulated to produce cortisol above this baseline amount.  In your son's case this fact may be have led to a vicious cycle in that the worse he feels emotionally, the more his adrenals are  stimulated to produce cortisol. The attempt to produce excess cortisol would result in elevated 17-OH progesterone levels and the normal course of action would be to pour on the medication in an attempt to bring his levels back to normal.  This justs brings on Cushingoid symptoms and increases his psychological distress.

I question whether it is still necessary to bring his 17-OHP levels down to some "correct" value.  He is 15 years old so precoscious puberty is no longer an issue and a height of over 5'7" is quite good for a male with CAH.  It sounds to me as though his doctor is so focused on treating "by the numbers" that she is overlooking the long term dangers of excessive steroid use including but certainly not limited to bone loss. I agree with Carol and your own observations that your son is being overtreated and I urge you to get another opinion.

I hope this helps.

Joan