Yes I have emailed back and forth with Jill, she has been very helpful. The rash over took her entire body and Jill helped us out with many questions about that. She has had MAJOR skin problems, liver problems, spleen problems, neurological problems, developmental delays in motor skills, muscle problems, problems making immunoglobulins and white blood cells, blood count and platelet problems, unexplained fevers, anemia, reflux, however her heart problems have been very mild. She was born with an ASD and a PDA both of which are believed to have closed, she sees cardiology in August for a follow up echo just to make sure everything is okay. All of our doctors have said that they hadn't ever seen it this severe or aggressive before. She had an ANA panel about a month ago and still had a high titer and FANA present. The good news is the took her off prednizone and plaquenil and she hasn't gotten worse so she gets to stay off of them. I had an ANA panel after she was diagnosed and had SSA-Ro, high titer and double stranded DNA which is the same as what her first panel showed at birth. What's weird is that I had no clue, I had never had any lupus symptoms and still don't. I attached a few pictures of her. Her rash is sooo much better than it was, we still have some problems with yeast in her neck rolls and armpits and its gets really red and chapped.