GI Problems

[Guest guest]

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