research mental issues RSS

[Guest guest]

Hi,

It's been a while, I know. These days I am doing my own research on

the mental issues for RSS. This way I am finding SO much more answers

then I would hope for. Also I'm trying to make some sort of bookwork

so i can get one clear picture about what RSS exacly is.

Only on question; a g-tube is just a feeding tube what goes down

someones throte, right? In Dutch it could be two things and I just

wanna know for sure.

I'll keep you posted on how I'm doing. The next three we won't have

internet, so after that I will let you know.

Amy

[Guest guest]

Hi Amy. I'm hoping that you plan to write a book with all the knowledge that

you possess about RSS when all of this is said and done. I sincerely believe it

is much more common than anyone thinks. I see people EVERY DAY that I think

could possibly have it! I swear I know of at least 3 people in my tiny home

town that have SEVERAL RSS features and issues! Come to find out just recently,

my BEST FRIENDS little girl was diagnosed at birth and she didn't even realize

it until a couple of weeks ago! What are the chances? We grew up together in

the same small town!

Anyways.................Good luck and I'll be waiting for the news that you're

publishing this book of RSS knowledge!

Jeanie (mom to , 19 and Brockton 18 mo. RSS)

amy_dirven wrote:

Hi,

It's been a while, I know. These days I am doing my own research on

the mental issues for RSS. This way I am finding SO much more answers

then I would hope for. Also I'm trying to make some sort of bookwork

so i can get one clear picture about what RSS exacly is.

Only on question; a g-tube is just a feeding tube what goes down

someones throte, right? In Dutch it could be two things and I just

wanna know for sure.

I'll keep you posted on how I'm doing. The next three we won't have

internet, so after that I will let you know.

Amy

[Guest guest]

Amy,

A ng tube, or nasal-gastric tube goes down the nose, through the back

of the throat and into the stomach.

Babies is the Neonatal unit's of hospitals ususally have these tubes

placed in. However, there can be side affects in the long run as they

are uncomfortable and the child tends to pull on them. Many RSS teens

have commented to me that they have phobia's associated with anyone

touching their face, or even putting on make-up. Mecially necessary in

infancy, but not a long term solution.

A g-tube,or a gastronomy tube is surgically put in through the

abodominal wall and opens directly into the stomach. Withint 3 months,

a flater button, or " Mic-Key " button is switched in and then the child

can have less tubing hanging around. My son had one put in when he was

2.

A J-tube, or Jujunuum (sp?) tube is put in the same way as a g-tube,

but into the the small intestine. This is done for our RSS kids who

are very prone to REflux and slow stomach emptying.

A Pyroplasty is a surgery where the the pyloric sphincter muscle at the

top of the stomach is tightened in order to control the severe gastric

reflux that can happen in some of our RSS kids.

A Nissen-Fundoplication is a surgery where the stomach is bent in two,

then the pyloric spincter is tightened and the J-tube is inserted. We

on the list serve refer to this as " The Big 3 "

Not every RSS child will have to have all of these procedures

performed. It all depends on how severe of a phenotype your child has.

Hope this helped!

-- In RSS-Support , " amy_dirven " wrote:

>

> Hi,

>

> It's been a while, I know. These days I am doing my own research on

> the mental issues for RSS. This way I am finding SO much more answers

> then I would hope for. Also I'm trying to make some sort of bookwork

> so i can get one clear picture about what RSS exacly is.

>

> Only on question; a g-tube is just a feeding tube what goes down

> someones throte, right? In Dutch it could be two things and I just

> wanna know for sure.

>

> I'll keep you posted on how I'm doing. The next three we won't have

> internet, so after that I will let you know.

>

> Amy

>