Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Hi, I am a peds OT who has been working with a wonderful baby boy who is suspected of having RSS. His mom gave me permission to ask you some questions because we haven't gotten enough info from the web or from local resources. However, there are lots of specialists in our area - they just don't seem to agree on what to do to help the baby. He is very small. He likes to eat baby food, but not formula. The nutritionist wants to keep baby food at a minimum since it has fewer calories than formula. He is getting lots of Polycose in the formula to bump it up to nearly 30 cal/oz. What have you all done about the feeding problems? Is a g-tube an inevitability? Is there a growth chart for RSS boys? I read in your posts that there tend to be regional groups, and a few places where physicians familiar with RSS are. What is available in the Southeast US? Thank you so much for any help. We really appreciate it! Cathy in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 Everyone - I sent a private email to Cathy the OT with the contact information for some professionals who are very experienced with RSS kids. > Hi, > I am a peds OT who has been working with a wonderful baby boy who is > suspected of having RSS. His mom gave me permission to ask you some > questions because we haven't gotten enough info from the web or from > local resources. However, there are lots of specialists in our area - > they just don't seem to agree on what to do to help the baby. He is > very small. He likes to eat baby food, but not formula. The > nutritionist wants to keep baby food at a minimum since it has fewer > calories than formula. He is getting lots of Polycose in the formula > to bump it up to nearly 30 cal/oz. > What have you all done about the feeding problems? Is a g-tube an > inevitability? Is there a growth chart for RSS boys? I read in your > posts that there tend to be regional groups, and a few places where > physicians familiar with RSS are. What is available in the Southeast > US? > Thank you so much for any help. We really appreciate it! > > Cathy in SC Quote Link to comment Share on other sites More sharing options...
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