Guest guest Posted October 28, 2010 Report Share Posted October 28, 2010 Hi all, I have been so relieved to find this group! We have a 3 year old daughter with congenital scoliosis w/ a 40' curve, diastematomyelia (just had surgery- 5 weeks post-op),tethered cord(also just fixed),syrinx,several abnormal vertebrae/hemi, and a hairy nevus.We adopted her last March from China and are absolutely in love!! She is a ball of laughs and endless energy and has amazed us with her grasp of skills in just 6 short months.She came to us with super low tone and only walking with support.She is now running even thought she is on activity restriction!!I thought that possibly we might be able to have her casted, but the more I have been reading, it sounds like that might not be an option. Our ortho was quick on the first visit as far as treatment plans as the diastem. and tethering had to be addressed first by the neurosurgeon. He briefly discussed rods in the future. I'm hoping to find someone who might have a child with similar issues. I have heard that the hospital that we go to in Boston is not doing EDF casting, but then I read that recently it was done. Can someone e-mail me privately the doctor that did it? I hope that is ok to ask? I really hate to think of more major surgery at this point, but if it is necessary then we will have to. Sorry for such a long post but with all that is involved, it is hard to sum it up in a sentence or two! Glad to be a part of the group, Jo huiandling@... Quote Link to comment Share on other sites More sharing options...
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