Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 Hi! Just wanted to introduce myself. I am the mother of two children diagnosed, by some of their doctors with RSS. The others doctors either say they aren't sure or they don't think so! How do you know who to believe? Heidi is 6 years old and is almost 4 years old. They have been through a lot and have a list of diagnosis a mile long. They both have diagnosis of RSS, osteopenia, delayed bone age and hypotonia. Heidi also has two heart conditions and has Asthma. They have both had a history of reflux. We are seeing some developmental delays, more severe for than Heidi. 's hands and arms are my biggest concern right now. He has the oddest positions and I am so concerned that this is going to further delay development in different areas. Heidi's biggest issue at the moment is pain in her back and through her stomach. She was in gymnastics, but we have taken her out and are trying Ballet. We are also very worried about the growth, or lack of growth in her lower jaw. Any advice? I look forward to chatting with some more experienced mom'sof RSS. Trish in SC Quote Link to comment Share on other sites More sharing options...
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