I don’t really have any insight for you, but can share some of your concerns.  I have a soon-to-be 10 yo SWCAH son.  He is due this week for his 3rd Lupron injection.  He was not showing signs of precocious puberty, however his bone age advanced to 12 yrs. 6 mos. when he was tested this spring at 9 yr. 7 mo..  He, too, has been doing well - or so we thought.  He was hospitalized once, that was last year, when a very nasty stomach bug got out of control.  Usually when he is sick we are able to keep him hydrated with Pedialyte, etc., but this time we just couldn’t do anything to keep up with it.

His height has always fluctuated around the 25th percentile, and his weight has more often than not been above the 90th - sometimes off the chart all together.  Last fall, at his annual ped checkup he had only gained 3 pounds and grew 2 3/4 inches!  His face and belly had actually slimmed down for the first time ever!  We were really delighted and thought it was most likely because the Endocrinologist started progressively reducing his Cortef dose back in early 2002 through mid-2003.  Early in the summer of 03 we thought he was starting puberty because of some pubic hair growth.  They examined him and determined it was the adrenal part of puberty probably due to too low a Cortef dose and not the pituitary part of puberty.  His Cortef was increased and the pubic hair eventually disappeared.

They re-checked his levels and increased his Cortef twice more before our visit this spring when the advanced bone age was discovered.  He also gained 11.8 pounds with only a 3/4 inch gain in about 6 months.  His dose was increased yet again after that visit and then they did the Lupron stimulation test, which came back inconclusive.  They decided to go ahead and start the injections anyway, due to the the bone age.  We are going this week for a repeat of the test, this months injection and dr. visit.....should be there till about midnight, I imagine!!

Anyway, my son has always been a good eater - never much of a sweets eater though until the last year or two.  He likes his desserts, but doesn’t really eat candy or snack on sweets otherwise.  He is always hungry though.  I find it difficult to deny him food!  I guess I really need to start making an effort though, although I think his appetite is primarily driven by the meds.

I know how you feel about the drs. responses.  I always go in with my laundry list of questions/concerns and by the time I get to the 2nd or 3rd thing I feel like the doc is looking at me like I am from outer space.  I have a masters degree and think I am of at least average intelligence, but I end up feeling like I am a complete idiot most of the time.

I had always said I would do whatever it takes for him, but I found when he was hospitalized last year, that I grew timid or something and I guess assumed "they" knew what was best.  In the end it all worked out, but we waited forever until they gave him meds and forever and a day before anyone from Endocrine showed up.  I think I will act/react differently if I am ever in that situation again (hopefully I will never find out!).

I hope it all works out for you!