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 ages 4 and 6 who have been diagnosed with -silver Syndrome, at least by some of their doctors. The others haven't made up their minds yet or disagree! How do you know who to trust? We have many questions and hopefully some help to offer to others. We've been through a lot as I'm sure many of you have. , age 4,also has asthma,hypotonia, osteopenia, bone age delay,and the diagnosis of RSS. He also has a speech delay, fine motor delay and gross motor delay. Biggest concern : His hands! He postures his arms and hands into the oddest positions. Is this typical of other RSS kids? Heidi, age 6, also has 2 heart conditions,osteopenia, hypotonia and bone age delay, along with the diagnosis of RSS. Also some developmental delays, but not as severe as 's. Biggest concerns: Her teeth and mouth! Her lower jaw is so small, the dentist here keep saying her upper jaw is overbitting because she sucks her thumb. But her lower jaw is so small, and has changed so little over the last few years, that I think they are missing the problem. Any advice? Trish in SC Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.