ElizabethHere is another link that has a great explanation, everything from what’s happening in the body to how it was inherited to different kinds.
Has your daughter had any kind of blood work done? Is the doc that you are seeing a pediatric endocrine specialist? This concerns me, because by the time our daughter was diagnosed and began treatment our docs hammered into us the facts of what it was, how she got it, her future treatments, what we could expect for future hospitilizations etc. . . we learned a whole new vocabulary in the course of 4 days and are still learning.Definitely get another opinion if you don’t feel comfortable with what’s going on, but most of all find a pediatric endo that you are comfortable enough to ask questions (even if you think they are stupid questions, if you don’t know the answers then they are NOT stupid). The biggest thing for us to realize is that we are our daughter’s best advocates, we have to speak up and ask questions and gather information because she cannot. So, with your enthusiasm for information you are definitely on the right track.Good luck and keep us posted as to how it goes!