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.
Patty, Lucy, Ginny, cured, and dbab thank you so much for responding and for the advice. I am going to print those pictures off and show him. I hope they show up ok. I think that would be a good idea to send her to a dermatologist first. I hadn't thought of doing that and would at least be a good starting point beings she's had the rash for a while. I just hope he does something this time. Im taking her dad with me to see her doc and Im taking the list of her complaints including the fact that she doesnt feel good every morning and can only get moving better after having a very warm morning bath. Again, I really appreciate everyone thank you.
Lupus (SLE), fibromyalgia, T4/T5 & L fractures, hyperthyroid, pernisious anemia, Interstitial lung disease, vasculitis, neuritis, osteoporosis, gerd, APS, thyroiditis, complex thyroid nodules, asthma, 4 valve regurg., hemolytic anemia,