Guest guest Posted January 18, 2006 Report Share Posted January 18, 2006 Hi Debbie.Thanks for your message. Lily was diagnosed RSS because I had a placental biopsy at 13weeks gestation and the placenta has 3 chromasome 7. we were told that it was confined to the placenta and would not effect the baby(lily) so we were happy with this..... So Lily is UPD7. I did a Google search when Lily was a few months old and not growing as she should and found RSS.We were already being seen by paediactrics and was told she was fine and would catch up.I got her seen by another general dr and yet again expressed my concerns about her growth prob and the placental biopsy result and she got the genetics guy to see us who diagnosed RSS on bloods done.Thanks for the insite to endocrinologists.... We will get her tube fed....We cannot carry on like this. we are all so sad and frustrated because I know that Lily is not getting the best start to life as she should, and it is down to us and not the drs to make sure that she does,which is sometimes scary that I know more about something than the drs who have the ability to change our lives!!!!! with love Jayne mum to Lily 15months and !3lb 12 oz Quote Link to comment Share on other sites More sharing options...
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