Thanks, crzy. There was a concern that one of our children had Marfans at one time, and we went through pretty extensive testing. It was determined that it wasn't Marfans after all, as a number of the key markers for Marfans were not present. I remember my dad's fingers getting clubbed, and they were not that way until his disease process set in. With my son, they are not clubbed at all. Tests initially showed a dilated aortic root, but a transesophogeal echocardiogram ultimately determined it's fine. No dural ectasia, etc... so in the end, despite some key similarities w/Marfan, they decided it's some other connective tissue disorder. E-D was also a possibility, but that is no longer considered likely, either.

OP, I'm so sorry you've had this ordeal, and that it wasn't diagnosed sooner!