Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 HI. My name is Judi and I am new to this group. My daughter is nine months old and I am pretty sure she has RSS. I have struggled to get her to eat since day one. She has been through many tests, all negative, but has still not gained adequate weight. I took her to a feeding specialist and she suggested testing for RSS. She has the cafe aulait marks, overlapping toes as well as a few other symptoms. Her symetry appears ok as of right now. My ped thinks it a mild case. I am so relieved that I finally think she will be diagnosed. She is scheduled for a feeding tube and genetic eval next week at Childrens Hospital in Philly. I have a question about the symetry aspect of the syndrome. Does the symetry get worse over time or can I feel safe knowing that if she is semi symetrical now that it will last? Please if anyone knows this info,I would love to hear it. Much thanks and prayers. Quote Link to comment Share on other sites More sharing options...
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