mommymilkies Posted March 30, 2011 Share Posted March 30, 2011 Does anyone know anything about these? My ds has it and we are trying to get him in for an official diagnosis. He has mild scoliosis, some extreme hypermobility, he's loose and floppy (but fairly strong), flat footed, etc. I don't know if it's Erhlers-Danlos or just Hypermobility with a lot of other related issues. Any input is appreciated! Quote Link to comment Share on other sites More sharing options...
PeterPan Posted March 30, 2011 Share Posted March 30, 2011 I'll give you a bump and suggest you also try the special needs board. Quote Link to comment Share on other sites More sharing options...
ondreeuh Posted March 30, 2011 Share Posted March 30, 2011 Are you getting him in to see a geneticist? I know a little about Marfan (some people think Abraham Lincoln had it). Scoliosis & flat feet fit into the symptoms. Marfan is associated with heart defects, so it's definitely important to figure out what exactly you're dealing with. Quote Link to comment Share on other sites More sharing options...
Desert Strawberry Posted March 30, 2011 Share Posted March 30, 2011 I have hypermobility but no firm diagnosis. I first started seeing symptoms around age 12. I'm not sure what you want to know, exactly, but I'd be willing to share my experiences. Quote Link to comment Share on other sites More sharing options...
mommymilkies Posted March 31, 2011 Author Share Posted March 31, 2011 Thanks, everyone. His father's family have flat feet, mitral valve prolapse, scoliosis, hypermobility, and are super tall & thin. So it fits Marfan, but they live to be quite old and that seems to be the worst of it. I'm most worried about heart problems with him. I just don't know what to expect. He's had so many specialist appointments in the past several months to figure out what is wrong. We're trying to get in to see an Orthopedic doctor at the moment, as that is what his neurologist suggested because of his spinal curvature. I figure if the Orthopedic doctor agrees, we'll get in to see a geneticist from there. I'm just more looking to see how other people are doing with this and what to expect. :001_smile: Quote Link to comment Share on other sites More sharing options...
Night Owl Posted March 31, 2011 Share Posted March 31, 2011 My family has a branch with very similar features to what you're facing. Tall, thin, hypermobility, flat feet, scoliosis. I was checked for Marfan as a teen and, just recently, an orthopedist wanted my oldest son screened. After speaking with a specialist, he said there was no way that what my family has is Marfan because we live too long. Marfan's patients rarely make it past age 50 without medical intervention. He didn't have an answer for what we have but he did rule out Marfan. You mentioned that your family are long lived so maybe you can worry less about Marfan. Quote Link to comment Share on other sites More sharing options...
mommymilkies Posted March 31, 2011 Author Share Posted March 31, 2011 Thank you. Marfan was one of my biggest concerns, along with some kinds of Ehlers-Danlos. Quote Link to comment Share on other sites More sharing options...
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