Angelmom, welcome to the forum. First of all, I hope you don't project your fear around your daughter. If she's in diagnosis limbo, I don't know what you can do for her except make sure she's leading a very healthy life: she should stay out of the sun, eat a healthy diet with plenty of vegetables, fruits, antioxidants, etc. and no get too fatigued. Being happy is a great silent cure as well.
I'm speaking here as a mom, not a doctor, though, and I suggest that the next time you go to the doctor you have a frank conversation with them an see what they recommend.
Lupus can often be mild. I believe, and so does my doctor, that I've gone into remission. That said, I would be worried too. I hope she does ok.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta,