My son was born 3-months prematurely.  A newborn screening showed elevated reading of 6320 nanograms per liter for 17 hyroxyprogesterone.    We began treating him as if he had CAH.   His treatment includes hydrocortisone, sodium chloride, and florinef.  His levels came down rather quickly, and by the time he was released from the NICU they were at 65.  All abnominal ultrasounds were normal.  The endocrinologist at the hospital began to think that the initial blood tests and screenings may have been somewhat misleading since he was so premature.  He suggested close monitoring while we slowly weaned him off his meds to see how he did.

We are now seeing another endo.  since we live so far away from the NICU.   This doctor is suggesting that we treat our son as if he has CAH until he is over two years old.   We are puzzled at which advice to follow.  We worry that if he doesn’t have CAH that the dosages he is getting might in some way suppress his adrenal glands.   At the same time we have not changed dosages since he was released over two months ago and his weight has doubled yet his blood levels are still in the normal range - just slightly higher (at 168) since he was released.

We were wondering if anyone has gone down either of these paths and has advice for us to follow.