Looking for support
I first came upon this site about 10 minutes ago. I read one post that mentioned most people lurk before posting, but I guess I'm jumping in with both feet.
My husband and I just found out a few hours ago that our 14 year old daughter has Lupus. We haven't even had the opportunity to officially visit with a doctor, the test results were received via the phone. She was tested 2 weeks ago because of arthritic symptoms. Her dad has ankylosing spondylitis so when symptoms set in, we automatically went to the rheumotologist. He tested her for several things and she came back positive for AS and Lupus both.
At this point, we barely know anything about Lupus, and I'm trying so hard not to get scared, but it's difficult. Right now, she is home with chicken pox and I look at her and want to cry because I don't know what the future holds. I have been researching all morning on the Internet and I'm careful what I read, half of it is clinical and I don't understand it anyway, and I know I shouldn't believe everything I read. I decided finding support group was the best way to go, because I want to talk to real people with real situations rather than listening to statistics and clinical studies.
I don't even know what questions to ask or what to tell. Anything you can tell me would be helpful.
She's 14, has Lupus and AS as I mentioned. Currently she is on Prednisone and will be switched to a different medicine (a TFN drug but don't remember the name) next month.
I guess that's it for now. Thank you so much!
Welcoome to the message board, I think you will find the information here very helpful. I too was diagnosed with Subcutenous cutenous Lupus in November and was out of work for several weeks with a red raised ITCHY (did i say itchy?) rash. I had it since September but it "blossomed" last month. My rash is gone and I am back to work, I too take prednisone and plequenil and seem to be ok for now. The lupus foundation of america www.lupus.org has some great information on it as well as the many posts you will see here. I am learning lupus isn't a death sentence, you just have to pamper yourself more and listen to your daughters body. I hope I helped in some way. :D
Hello and Welcome WD65 :lol:
As a mother whose child suffered with Lupus, I completely understand your fear, your sadness and your trepidation concerning her future. But, although there are many of us who are very sick, your daughter appears to have been diagnosed quickly and is already being treated. Research has found that with early diagnosis and prompt treatment,patients are better able to manage the disease without it becoming debilitating and the chances of achieving remission are increased.
You are doing the right thing by learning as much as you can about the disease, its treatments, its symptoms and its emotional ups and downs. Educate yourself, your husband and all of your daughter's significant family members and closest friends so that she will not have to feel isolated, shunned, pitied or lonely. Make sure that her doctors listen to you, answer your questions and treat her symptoms.
Remember that we are here for you and for her, to answer your questions, allow you to vent or to just offer support.
I wish you and your daughter the very best
Peace and Blessings
WD65, it is so normal for a parent to feel the way you do. My parents are the exact same way i'm sure. I'm 17 and was diagnosed last year. MY parents are very supportive and that helps a lot. Just remember that your daughter will be in pain most of the time whether it is mild or severe, she still needs you as a support system. My dad bought me a book for my parents and myself to read to better understand Lupus and it's effects. I found it to be a little educational, it has the views of patients in it some what. umm I think it's called "Living With Lupus" yupp.. it is. You can buy it online, or if you want, I could send it to you via mail because i'm done with it.
I suggest that you listen to your daughter when she explains to you how she feels. It is important that you both understand what she's going through so that yoi can always tell your doctor exactly how she feels and when because flare ups happen and go away sometimes quickly and when you get in to see a doctor she could have minor symptoms even though the day before she could have been in a full fledged flare up! Maybe you should document her symptoms and the severity of them.
I must agree with the others, this forum is great for information and support, maybe your daughter would like to join and ask questions that are bothering her, or questions to more inform your daughter and yourself.
Godd luck with everything. -Bianca-