Guest guest Posted March 17, 2004 Report Share Posted March 17, 2004 A new type? 'Bout time they typed those of us with " TypeIII with Vasscular overlay " ..seems like there are quite a few. I guess I'll have something new to tell my MDs when I get home from Buffalo. It'll be so good to end the confusion for MDs that want to see the symptoms in print, and didn't know what to do with overlapping issues. Do you know if they can test for it, or do the tests come back 'normal'? is still holding off on seeing an MD, as she has just gotten her long term disability coverage in place. They're thinking about another baby (hooray!!), though I do worry about how she'll do. We think Rosie may have EDS(she's 3 now), as she's a bit too flexible, has had a couple of dislocations(knee/hip), and has really noisey joints. When my kids are all at home the great room sounds like a popcorn popper, lol.. Josh at 22 is still in limbo about another heart surgery. I'd rather they do it before he gets any worse, but his surgeon is still watching the holes enlarge. He has a bad valve, and as his heart enlarges the holes in the septum get bigger. We didn't know there were holes until a couple of years ago. That worries me..as he's had surgery before, and been under a cardio's care since birth. The other kids are doing ok, just popping and cracking..though they do get sore after rapelling or canoeing. Two of the boys had to drop wrestling because of dislocations, though my oldest did well because he was flexible. I haven't seen any info on the new type..is there any out yet? Or will it wait until July? Let me know how you're doing..it'll be great to see you again! ((hugs)) Jean Quote Link to comment Share on other sites More sharing options...
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