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Showing results for tags 'anyone have experience?'.
Hey, smart, resourceful people..... I know this not a PANS or Lyme issue, but my complex DS16 (see my tag line) was just evaluated by a physical therapist and he is suspecting Marfan Syndrome. My son is 6'2" (74") with an arm span of 77". He is skinny and his trunk is in disproportion to his long skinny arms and legs. He has very long skinny fingers and thin gangly toes that look more like fingers. His joints are loose and he is hyper-flexible. I am not sure who could rule this diagnosis in or out. Marfan Syndrome can involve cardiac issues, so it's probably something I should inv