CarolChris,
You didn't mention which specific symptoms of premature adrenarche led you to believe your daughter might have Late Onset CAH. My son was diagnosed at the age of 6 and thus, would also be considered a late onset patient (actually, he is on the borderline between being simple virilizing and non-classical.) These are some of the symptoms that, for an older child like your daughter, might lead to a suspicion of CAH or, at least, warrant a closer look:
- Family History of CAH
- Accelerated Growth (Meaning growing at a faster RATE every year. For e.g. if a child starts at the 90th %ile for height, and stays there year after year, s/he could just be a tall child. However, if she starts at the 50th %ile, jumps to 75th the next year, 90th the following, then jumps off the charts the year after, it could signify growth "spurting," resultant from the excessive androgen production characteristic of CAH.
- Signs of Sexual Precocity--pubic hair; axillary (underarm) hair; axillary odor; acne
- Signs of Increasing Virilization in Girls---I have a boy, so I'm not too sure about this one, but I believe that girls with CAH can have progressive symptoms of genital virilization such as labial fusion, enlarged clitoris, etc., if they are left undiagnosed and untreated. Again, I am not positive about this, but believe that this may be the case.
If your daughter's blood tests have all come back normal (thought the DHEA is on the high end, it is still within normal ranges); her bone age is essentially consistent with her chronological age; AND she doesn't have any of the warning symptoms, I would say it is not unreasonable for your endo to feel that she is developing normally, albeit perhaps a bit ahead of some of her peers. Only you can decide, however, what your own level of comfort is, and obviously, there is no way to be certain about a diagnosis (or not) of CAH without doing the ACTH stim. test or genetic testing.
I've found a couple of good articles that describe normal and abnormal (both precocious and delayed) puberty. You may want to check out
http://www.aafp.org/afp/990700ap/209.html
Disorders of Puberty andhttp://www.aafp.org/afp/990700ap/990700d.html
When Your Child is Close To PubertyIt's interesting to note that, according to the experts, girls with signs of early sexual development are often "normal," while boys with the same symptoms often have an underlying pathological cause. To quote from the first article, "Girls have a benign central cause for precocious puberty about 50 to 90 percent of the time, but about one half of all boys with early puberty have a pathologic peripheral cause. Thus, all boys with precocious puberty should undergo detailed investigation, but in girls additional investigation can be based on the clinical impression."
There was also an article in the 10/30 issue of Time Magazine entitled "Teens Before Their Time."
http://www.time.com/time/magazine/articles/0,3266,58388,00.html (Someone else mentioned this article, as well, in an earlier post on this Message Board.) The point of this article, again, I believe, is that girls in our society are developing at an increasingly rapid pace---showing signs of sexual development earlier and earlier---again WITHOUT any underlying medical cause.Sorry for the long post, but hope this information is useful in helping you to determine whether or not to pursue this issue with your child's doctor. Best of luck to you and your daughter!