I wanted to welcome a new member, vetteme22. I started a new topic for you so that more people would see it and could respond to you.
My daughter is 12 and has a positive ANA of 1:640 in October and again in January. All the other tests on the Lupus panel are negative. She does have oral ulcers in her mouth, raynauds, dry eyes and is extremely tired. She goes back to the Doctor in April for more testing. He did not start any medication yet and says this is the beginning stages of lupus. She has been out of school for 3 months and started back on Friday and it wore her out. She is so exhausted with any little thing that she does. Does anyone have any suggestions?
vetteme, I'm really sorry your daughter is going through this. Of course I'm not a doctor, but in my opinion, I would think the doctor should begon treating your daughter's symptoms since her symptoms are severe enough to affect her quality of life and keep her from going to school.
My 10 year old son has an autoimmune disease and I know how hard it is to watch your child suffer and to feel helpless. The best piece of advice I can give you is to find a really good pediatric rheumatologist if you haven't already. There aren't a lot of pediatric rheumies around so you might have to travel. When I was looking into all of this for my son I found out that these illnesses present differently in kids than adults and that the treatment might be different too.
I really hope the doctor can help your daughter start to feel better - they really need to try to help her with her fatigue. The only other thing I can say is to help your daughter pace herself and not push herself to do too much.
Please feel free to ask any questions you have and know that we are here for you.
Take care and I'm glad you joined us.
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; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears
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