Thanks for your messages. It is so reassuring to know that I can become connected to a world of people who share similar experiences, and a place I know my daughter can turn to when she is old enough.
I am curious as to the fatigue that I have heard from so many people. My daughter is your typical 8 year old, plays soccer and basketball, sleepovers, ect. I really don't notice her being "tired", although she has always, and I stress always, needed to be in bed at 8pm, and will sleep till 7 or 8 am. After sleepovers, she is a bear! Is this something that will progress as the illness progresses?
Also, I have heard some controversy over medications. Before connecting to this site, I was very firmly for starting treatment; as her bone growth is advanced, by about 1-1 1/2 years. Yet, now I don't know. If she starts medication, then she will be at an increased level of Adrenal crisis? And how will this effect her activities such as soccer or basketball? I was hoping that medications would keep her life relatively normal, as she is today. I also thought that starting meds early might prevent syptoms of the illness such as baldness, excessive hair growth, and POC.
Again, any feedback would be great.
Michelle
