Susan,

My son was also over the 95th %ile line from about age two or so. But, he got progressively further and further off the charts each year. It’s the PROGRESSIVELY getting taller and taller each year that can often be an indication of CAH.

AFter his diagnosis of CAH, our peds endo told me that he knew it was CAH, as soon as he saw my son’s growth chart. And, the first time I saw everything plotted out on ONE graph, I could see exactly what he meant. It is the PATTERN of growth that is significant, not just the actual numbers.

YOur son’s low testosterone level continues to be puzzling, especially if that was a morning sample, his testicles have increased in size, and he is ejaculating (!). That would certainly seem to indicate that central puberty has started, even if in the early stages.  So whatever is causing this, you would expect the testosterone to be much higher, based on his physical symptoms.  Did they give you the units of measure?

As you know, there are a number of different conditions that can cause symptoms of precocious puberty, some adrenal in origin, some pituitary in origin. The fact that your son had pubic hair and acne first, and enlargement of the testicles second, would seem to suggest that this is adrenal in nature (at least to me.) If it were pituitary in origin, I think you would see enlargement of the testicles, first.

Though I am also surprised that your son didn’t have more symptoms of hyperandrogenism (if this WERE an adrenal problem), I would also have to agree with Bonnie that maybe some people just don’t get certain symptoms. For example, my son started out with body odor and pubic hair, but no acne or axillary hair. Even now, he still has neither.

As far as the Lupron shots: Lupron is supposed to be given deep intramuscularly, so the needle is quite long and intimidating. The first time my son ever had the shot, he did complain of pain and soreness. In fact, he limped around for hours.  But, since then he pretty much just toughens it out---no Emla, Tylenol, or anything---but he is probably the exception to the rule. I am lucky that the physical part of needle sticks doesn’t seem to bother him much. ( But, he hates having to get the shots anyway, so I pay in other ways...can’t win!)