My daughter diagnosed at 12 with SLE
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.
Hi Mommymc :lol:
BEEN THERE! DONE THAT!!
Fortunately, the hair almost always grows back. However, I found that with myself and my daughter, it was not the same thick, curly hair that we had before. We learned to adjust because we were so happy that it grew back.
The moon face and the swelling are very unfortunate byproducts of the steroids. At such a young and tender age as your daughter's, I know that it will be very difficult for her to deal with these bodily changes. I can tell you from personal experience, that it will mean the world to her to have a mother who supports her, understands her, is knowledgeable and honest. She knows that she will always be beautiful to you because she is your child and you love her, but she is, understandably, concerned about how she looks to the world (her friends, the public, etc.)
There are numerous websites and books that offer help to parents who children have be diagnosed with Lupus. All of them seem to be in favor of a support group with other children her age. Do you know of any in your area?
Here are a few websites that might help you:
Here are some good books that might be helpful
Living With Lupus - by Sheldon Paul Blau, Dodi Schultz
The Challenges of Lupus - by Henrietta Aladjem, Henrietta Aladiem
Coping With Lupus - by Robert H Phillips
Lupus in Children and Young People-by Professor T R Southwood, University of Birmingham and Dr Ilona S Szer, San Diego, USA.
Living with Lupus from Eleven- by Adam Cran
I hope that this has been helpful to you. I wish you the best of luck and remember that your daughter will always recognize and appreciate your love, care and willingness to learn on her behalf!
Peace and Blessings
SaySusie, thank you for your vote of confidence! The book list is very helpful. I have requested with our local library today. Your generousity of kind words mean the world to me right now. I feel as though there should be something that 'mommy can fix'. Although I know I can't make this beast go away, it's nice to know there are wonderful people such as yourself that can understand the frustration. Thoughts, and prayers, mommymc.
I just wanted to let you know that I have read The Challenges of Lupus by Henrietta A. It was quite a read I read it 3 times. It took a little while to absorb. I had to stop, go back and re read .... Also, I read Coping with Lupus.
I have found other books, but the rheumatologist told me not to get any books that were printed before 1999. The reason for that, he said, is that most authors paint grim pictures of being diagnosed before that. He said to be careful about the old information as it is depressing.
Anyways, I do want to thank you for your help and kindness once again.
EVERYTHING GOOD IS POSSIBLE !!!