Posted 1/28/2008 7:49 PM (GMT -7)
I'm so sorry that your daughter is dealing with a disease like lupus, this young..... I'm heartbroken for her, and you...
My best advice would be to try and see that pediatric rheumatologist sooner. April is still 3 months away. For someone living with the fatigue, pain, and potential complications that this disease brings with it, 3 months will feel like an eternity. Do whatever you can to see that doctor asap.
Other than that, it would be wise to keep a daily diary of her symptoms, how much she sleeps, eats, take pictures of any rashes or skin involvement. Doing this makes your visit with the rheumy much easier. You will have everything you need. Write down in as much detail everything she goes through. If she can, have her describe her pain, fatigue etc, and keep track of what she's feeling and doing. Every little bit you can give the doctor is a step towards getting her treatment.
I was diagnosed with a 1:640 ANA. I also had all the other positive blood test results though. I mean all of them.... So it was an easy diagnosis, once I was in the hospital. I pray that you and your daughter get tremendous care and all the attention you so rightly deserve.
Does she find the fluorescent lights in school to be hard on her? That was one of my early symptoms in junior high. I couldn't tolerate fluorescent lighting. Found out not too long ago, that they are very bad for lupus! They'll cause us to flare up. Just wanted to mention that to you in case she's in contact with them regularly.
Please stay in touch with us. This is a very good place to gather information, ask questions and get support. If your daughter wants to join in, we encourage that too. The more she learns about lupus, the healthier she'll be and the happier she'll be. I always like to say, "knowledge is power!". It sure is with lupus...
All the best,
Oh, for the muscle pain and aches in the morning, hot showers, or hot baths help. Also, if she can do her best to not be too sedintary. The more she moves around, the less stiff she'll get. I'm not talking heavy duty exercise. That probably isn't the best thing for her right now. Just moving around the house. Go for a stroll. Easy, light movements will keep her more limber.
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13
33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus