Hi blessed and welcome. I am so very sorry to hear about
your neice - what an absolutely terrible thing for such a young child to go through. I really hope docs caught it soon enough to be able to reverse some of her kidney problems. I don't know about
young children, but I know that members here with kidney problems have done very well with treatment and a lot of damage was reversed. We have also had members who have had successful kidney transplants when their kidneys have failed.
Like I said, the good news is that lupus can be very treatable, but it is a serious disease, especially when it attacks organs, but there are many treatments available when organs are affected. Is your neice seeing a nephrologist for her kidneys? My other thought is to try to make sure your neice sees a pediatric rhuematologist since they are specifically trained to treat children with lupus. Regular rheumatologists don't have the specific training in how these diseases affect children. There aren't a lot of pediatric rheumatologists, so your neice may have to travel to see one.
My 10 year old son has autoimmune issues and the docs aren't sure if it's a lupus type thing or more of a juvenile rhuematoid arthritis. We are seeing a pediatric rheumatologist later this month. It's so hard to watch a child suffer and go through these kinds of things. Please let me know if you have any questions or if you just want someone to talk to. It's been very hard watching my son be in so much pain and to feel helpless, so I can relate some to what you are going through. Your neices parents are welcome to come here too and ask any questions.
Take care. Your neice and her family are in my thoughts and prayers.
Diagnosis: UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds: Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears
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