12 Year Old Diagnosed and help wanted
I am new with posting anything. Please excuse mistakes.
First of all, I have read many posts on this site, and I must say, you are all very brave and strong. I admire the great attitudes, and will to fight this disease.
After 5 days in hospital, a bone biopsy, spinal tap, xrays, ecg, and a million-or-so blood tests into veins that kept disappearing, my daughter was diagnosed with SLE on June 1. Immediately, she had 3 days of 1 GRAM pulse treatments. Then put on 40 mg.prednisone, 200mg plaquenil, 1 mg.folic acid, 81mg ASA(she has antiphospholipid antibodies), 400 IU of Vitamin D, Multi vitamin, 1500 mg. Calium carbonate.
Things are getting better with this terrible beast. The Rheumatologist, has lowere her prednisone down to 25mg.daily. Our family got excited. My daughter is hoping that her once beautiful hip length hair will stop falling out in clumps, and that her face and tummy will stop getting bigger. I tell her that she looks fantastic, but as she just turned 13 a few weeks ago, all I get is "Mom, stop lying to me".
I am looking for anyone who has "been there, done that", or any helpful life hints with this.