I am desperate to find any answers. My daughter is 16 (17 in just a few days). 1.5 years ago she was a healthy girl that danced 5-6 days a week. First her primary noticed increased heart rates 170+. After a couple monitors, tests and trips to Childrens Hospital in KC they diagnosed her with POTS and EDS. Then she slowly began getting more tired, unable to complete dance classes ect…. By Mid July this year we noticed she was losing weight and she was losing some hair. She was under some stress so we dismissed it. But by August she had lost 22 pounds and no longer was under stress. After a trip to the Primary he was thinking auto immune so he ran a ANA. Her titer was 1:320 so he thought it was worth investigating and sent her to a Rheumatologist and GI Doc. The Rheumatologist ran another ANA along with other tests. Her titer was 1:1280 at that time. However other tests came back 'within limits'. The GI has also done some test that were within limits. She maintained her weight but it takes us 2800 calories a day to do so. And in the mean time has had urine tests that were abnormal, developed kidney stone, cyst on kidney, multiple cysts on her ovaries, still can't get energy to even go to school, dance ect… She has had 3 GI infections in the last 8 months and the list goes on. Rheumatologist say well some people test positive even at 1280 and have no autoimmune disease. But what else could it be. And even though my Primary is amazing there is only so much they can do. I KNOW there is something wrong with my child if not autoimmune then what?
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