I have lupus and my young daughter is currently being investigated for it too.
She develops a very angry rash on her arms in sunlight - thankfully the school have agreed to her wearing a long sleeve shirt.
Recently she seems to have started getting very bad tummy ache and even vomiting when she's been in the sun - even only a tiny bit. I am doing my utmost to limit her exposure and I'm covering her up as much as poss.
I suffer with the sun also and because I have fair skin and freckles I have always been very mindful of the sun. My daughter, though, seems even more sensitive than I am.
Please let me know if symptoms this severe ring any bells with you.