Looking for support
I first came upon this site about 10 minutes ago. I read one post that mentioned most people lurk before posting, but I guess I'm jumping in with both feet.
My husband and I just found out a few hours ago that our 14 year old daughter has Lupus. We haven't even had the opportunity to officially visit with a doctor, the test results were received via the phone. She was tested 2 weeks ago because of arthritic symptoms. Her dad has ankylosing spondylitis so when symptoms set in, we automatically went to the rheumotologist. He tested her for several things and she came back positive for AS and Lupus both.
At this point, we barely know anything about Lupus, and I'm trying so hard not to get scared, but it's difficult. Right now, she is home with chicken pox and I look at her and want to cry because I don't know what the future holds. I have been researching all morning on the Internet and I'm careful what I read, half of it is clinical and I don't understand it anyway, and I know I shouldn't believe everything I read. I decided finding support group was the best way to go, because I want to talk to real people with real situations rather than listening to statistics and clinical studies.
I don't even know what questions to ask or what to tell. Anything you can tell me would be helpful.
She's 14, has Lupus and AS as I mentioned. Currently she is on Prednisone and will be switched to a different medicine (a TFN drug but don't remember the name) next month.
I guess that's it for now. Thank you so much!