Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 > Sorry I don't know your name, but I was intrigued by your posting. > I have an almost 12 year old RSS son who is also still tube fed, > and I've only met one other RSS child older than him who still had > a feeding tube (who has since had it removed). He has had years of > feeding therapy, including attendance at an out of state feeding > program. I'd love to know more about your daughter. Feel free to > email me privately at capuano_k@... Kim C. > I just wanted to let parents of RSS children to make sure their child > has complete and thorough upper and lower GI exams by the age of 4. > One aspect of RSS that is rarely written about or paid much attention > to is the fact that often RSS children can have a malrotation of > their intestines (both large and small) as well as adhesions > constricting their duodenum. This is often what leads to the feeding > problems. It's very uncorfortable for the child to take in > nourishment if these problems exist. Surgery unfortunately is > usually the only option. My daughter's GI tract was severely screwed > up. To give you an example of just how screwed up it can be, my > daughter's appendix was under her second rib on the LEFT side of her > abdomen. Naturally her surgeon removed her appendix when he was in > there (they would have never known its location without the surgery) > because if she ever did have an attack of appendicitis regular > doctors most likely wouldn't be able to diagnose it because of where > it was. My daughter is now 15, about to enter her sophmore year in > high school. She does pretty well in school and appears to have no > developmental problems with the exception of being remarkably > allergic to homework (who wasn't?). She still receives probably 95% > of her caloric and nutritional needs via her g-tube, but she is > trying a lot more foods and eating more. She'd kill for pizzas with > black olives, loves corn, fruit-rollups and yogurt. Her doctors at > the U of M have determined that RSS kids (there are a few being > attended to at Minnesota) literally have no appetite in most cases. > The result of that is that OT for feeding isn't really all that > helpful and in fact more traumatic to the child. As RSS kids get > older they come around to the idea of eating, once they understand > the concept. Well I've rambled long enough. thanks > Quote Link to comment Share on other sites More sharing options...
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