Hi Julie,
I think it would be a very good idea to raise these issues with your daughter's endo. It does sound like something is amiss....especially when she nearly passed out in the shop. Is it possible that her blood pressure is too low? Have her medications been reduced or increased in the last few months? Has she had a plasma renin test done recently?
Regarding the acne/pimples, this is usually related to hormone changes....but the question is.....is this related to an insufficient dose of her steroid replacement or the beginnings of adolescence? Although eleven may be quite early in a 'normal' child to start experiencing acne/pimples, in a CAH child this is possible, especially if her replacement dose is inadequate.
As all these things have been happening to her, since the dose changes in the last six months, I suspect that her dose is too low. Are you familiar with her normal levels of 17-Hydroxyprogesterone and Androstenedione? I find, it is a good idea to ask the doctor for a copy of the blood test results each time, and then, at my leisure I can go over them, file them and compare with the previous blood/urine tests. This way I understand what is happening with the levels. For years, I didn't do this and consequently didn't have a clue as to what they all meant.
I was trying to find an article in my CAH resource files which discusses, issues relating to CAH adolescents and the dose juggling involved. I cannot find it at the moment, but if/when I do, I'll post it.
All the best for this weeks endo's visit.
Rosalie
