Hi My name is Shelly I am new. My daughter is 15 and has had so many problems and I am to the point I don't know what to do. It all started when she was in eighth grade. She got really sick with flu like symptoms. I took her to GP and they of corse said it was the flu. After weeks she ended up with pneumonia and finally after all that, her white blood count dropped really low 3.6. At that point Her GP sent her to a peditrician. Her biggest complaint was her back pain and her arms feeling so tired she couldn't hold them over her head to straighten her hair, and she slept all the time. So they decided to do blood work and she had positve ANA and two poistive Titers antiSCL and JO-1ab not very sure what this is and the only reason I found that out is I got the records. The peditrician told me at that point she had lupus and they were referring her to a peditrician Ruematologist. So I was thinking we were going to be in great hands. At that point she was put on Naproxen and flexerall. It took over seven months to get an appointment with the specialist. By this point she was feeling a little better not perfect though. First appointment with the Ped Rhu. we were told she definently had vasculitis and they started doing tons of blood work and x-rays. Well some how she ended up doing a MRI of the back and neck, which showed she had a synovial cyst between the L4-L5 and she had rt sided arthrpathy and mild degenerative disc disease in her neck and once again the only reason I know this, is I got the report from the hospital. Not yet has one doctor told me. So now to make a long story short it has been over 2 years and many ER trips For about anything and everything including blood in urine. We go to Ped Rhu. every six months for them to tell her she has fibro. Now she hurts everywhere she tells me everyday her bones hurt her joints hurt and now I think she is having gallbladder problems which causes her really bad pain. But because her ANA is now negative nothing is wrong with her. Her knees give out on her at least once a day her hands to me look like old womens hands more and more and "nothing is wrong with her". I have evan switched GP's and he says she is depressed. Well I quess so when she doesn't feel good ever. I have left out many more details that I am sure is important but its hard to remember everything. Oh yea she has broken her wrist I can't tell you how many times. I honestly do not know what to do.
The Ped Rhue. just tells her to exercise more. Well lets see she works at a horse barn she cheers for her high school competition team this year she works out all the time everyday and they know this. What am I to do????????