TravelingChris Posted March 20, 2009 Share Posted March 20, 2009 After researching options, I decided to try calling the Kennedy Kreiger Institute in Baltimore which has specialized clinics in Osteogenesis Imperfecta and in Bone Health. I left a message and a diagnostic nurse called back. She was amazed that although we have seen two geneticists in the past, neither every did any blood testing at all. Anyway, they will be sending me questionnaires to fill out on both my daughters and I will do that plus send medical records that I have. Then they will schedule us for a clinic visit in the clinic they think will serve us best. Here is the thing- their clinics involve an endocrinologist, a genetic work-up, a physiatric, a Physical therapist, a nutrionist (if it is the bone clinic for osteoporosis which my youngest has), etc. etc. This is what I really wanted so that we can get answers and help for them. Thanks to everyone for advice and encouragement and I will keep you all posted as we find out why my youngest has osteoporosis and why both have hyperlaxity. Quote Link to comment Share on other sites More sharing options...
Tutor Posted March 20, 2009 Share Posted March 20, 2009 That is wonderful news! Thanks for updating us. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 20, 2009 Share Posted March 20, 2009 I am so glad that they are taking you seriously. Good for you for keeping at it! Quote Link to comment Share on other sites More sharing options...
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