Re: GI Problems

[Guest guest]

Does your daughter use her g-tube at school?

You make a good point to have a FULL upper and lower set of GI tests.

My son is 6 years old and we thought had every test imaginable. Much

to our surprise he was diagnosed with a malrotation and had surgery to

correct it last month. He has had a g-tube for years and is currently

GJ fed. While he has had many tests we believe each time they were

looking for something specific and he never had the full GI series.

With a congenital malrotation the appendix and the colon are on the

opposite (wrong) sides of the body. That is why the appendix is

removed and the colon repositioned. While the surgeon did not want to

speculate on improvement's in his oral intake he did say that TJ would

be feeling significantly better now that the malrotation has been

corrected.

Meribeth

[Guest guest]

Thank you. Your insight is very valuable and most appreciated.

Looks like we will be adding this to our list (my RSS boy is 2).

Thank you for sharing - it is most appreciated.

Also, glad to know your daughter is doing well. I have a 15 year-

old boy entering his sophmore year as well and can relate to the

homework thing too. Fortunately for us, he has agreed to forgo

football this year. Maybe he'll actually have TIME for studying now.

Take Care.

- H

> 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

[Guest guest]

She did up until 7th grade. During lunch she would go to the nurse's office and

get fed, 8 oz a special high caloric formula similar to pediasure, I can't

remember the brand name. You couldn't buy it OTC, it came from the medical

supply company. The reason she went to the nurse was just for her personal

comfort, she would have been too mortified to do it in public. Now she eats

lunch with the rest of the kids (although how much I'm fairly skeptical). We

still give her her 40 oz of Ensure Plus every night on the pump to maintain her

weight. She's presently 4'10 " and 81 lbs. She was on growth hormone

(protropin) from 3 until she was thirteen. The Endo discontinued it because the

bone growth xrays indicated she was done growing. But at her most recent exam

it appears she has started growing again so they're looking at putting her back

on it at a much higher dose.

meribeth3223 wrote:

Does your daughter use her g-tube at school?

You make a good point to have a FULL upper and lower set of GI tests.

My son is 6 years old and we thought had every test imaginable. Much

to our surprise he was diagnosed with a malrotation and had surgery to

correct it last month. He has had a g-tube for years and is currently

GJ fed. While he has had many tests we believe each time they were

looking for something specific and he never had the full GI series.

With a congenital malrotation the appendix and the colon are on the

opposite (wrong) sides of the body. That is why the appendix is

removed and the colon repositioned. While the surgeon did not want to

speculate on improvement's in his oral intake he did say that TJ would

be feeling significantly better now that the malrotation has been

corrected.

Meribeth