Patty gave you great advice. It seems this doctor isn't listening or just doesn't know enough. I would add that you should take a picture of your daughter's rash in case it should fade before she see's the doc (this one, or the next one). Same goes for mouth sores if you can manage it. Itemize her symptoms and the family history on paper - give one to the doctor - and then request a referral to a rheumatologist for her, based on what you know personally about the disease and what you've seen your daughter deal with, and include the family history.
Most doctors are reluctant to deny a referral when the patient requests it - especially with an arsenal of very good reasons for it. It might get you in sooner than starting over from scratch - but do what you have to do.
I wish you the best and hope you and your daughter get answers and treatment very soon!
Im sorry I have not responded yet. I was staying out of town for my rheumy apt that I do every 2 months. We went to the zoo for 2 hours and I had on a long white shirt and spf 55 (highest spf I have right now). Despite all that, I ended up with a worse major rash on arms and malor on face I know I shouldnt have been there and I knew I was going to suffer but I needed to do this for my kids. Unfortunately my daughters rash got worse and spread slighly to the sides of nose along with the forehead and nose. She slept all the way home (3 hours) today.
Thank you all so much for responding. I have taken pictures of her fingers when they hurt, took a picture in march when we got back from AZ this is when the rash began and Im going to take another today. Im also going to let the doctor know what my daughter said to me when she takes the prednisone. She says "mom I need to take my prednisone now. You know what mom it tastes so bad but it makes me feel soooooo goooood!" she said this in february and it litteraly (sp) made me cry. Last night she asked me "mom do you think Im allergic to the son?" What do you say to a little girl like this?
Thank you Patty. I know that early intervention could save her organs and I think it really scares me. I will have a hard time with keeping her out of the son but if she gets confirmed I know she will follow through with it if she knows it will make her feel better. Ill help her understand that when she is out what precautions to take. The sad thing is that she is a summer girl. Loves the heat and loves the sun. My boys are opposite they love the winter.