feeding tube nutrition

[Guest guest]

My daughter seems to be having a very bad flare with lots of

D, major body aches, and some vomiting. My wife went to her

(150 miles away) to help her, and try to bring her home - if

possible, rather than hospitalize her there. I may not be

asking this quite right, so have patience with me. Rhonda

asked something about a hospital feeding tube

nutrition/food, saying there is a " legal " type and one that

is " not legal " , and she would like to know which one our

daughter needs. I tried looking on the website to no avail,

and the email she has saved. Can anyone give me a fairly

simple answer as to what she is talking about.

#2 ALSO: does it matter what sort of IV fluids she can

have? Or does the idea of legal/illegal not apply if it

doesn't go thru the gut?

Harman

SCD family for >2 years

[Guest guest]

Hi ,

> My daughter seems to be having a very bad flare with lots of

> D, major body aches, and some vomiting. My wife went to her

> (150 miles away) to help her, and try to bring her home - if

> possible, rather than hospitalize her there. I may not be

> asking this quite right, so have patience with me. Rhonda

> asked something about a hospital feeding tube

> nutrition/food, saying there is a " legal " type and one that

> is " not legal " , and she would like to know which one our

> daughter needs. I tried looking on the website to no avail,

> and the email she has saved. Can anyone give me a fairly

> simple answer as to what she is talking about.

Here is an old post Elaine wrote about what can go into a feeding

tube:

http://lyris.dundee.net/read/messages?id=237038#237038

> #2 ALSO: does it matter what sort of IV fluids she can

> have? Or does the idea of legal/illegal not apply if it

> doesn't go thru the gut?

Generally IV fluids are okay cause they are going straight to the

bloodstream and bypassing the gut. If anything out of the ordinary

is in the IV (saline solution...) just ask about it specifically.

Here is some info from Elaine's website on Elemental diets:

Elemental Diets

Seth writes:

Peptamen is not SCD™ legal and will only serve to undermine the

effects of the diet. Lactose and starch can feed pathogens in the

gut, sometimes without noticeable effects. I went to the Peptamen

website and noticed that it has all sorts of other illegals (ie guar

gum) in it. I think that Raman put together a website about Nestle'

modulan, which is very similar to peptamen:

http://www.scdrecipe.com/j_modulenibd.html

I imagine that most of the calories that are of importance in the

Peptamen come from MCTs (Medium-Chain-Triglycerides). MCTs have been

used for decades to help people get energy quick (they are often

used to feed the patients through IVs).

If you try the SCdiet, which I wish I had done when I was first

diagnosed with crohn's (long story- basically my life was a living

hell with various medications etc), then I think that you should be

able to make your own SCD™ equivalent to Peptamen at home. You can

buy MCTs fairly easily (i can give anyone sources I use to get it -

I have been making my mayo out of MCT oil). Probably the cheapest

source of MCT comes from coconut oil. Coconut oil also has the

advantage of having lauric acid (~48%) which

turns into monolaurin in the gut - a powerful antimicrobial agent -

found

in mother's milk to help combat infections. A good website on

coconut oil is:

http://www.coconut-info.com/

There are a bunch of recipes for SCD™ yoghurt smoothies that you can

whip

together to get good solid nutrition into your son. If you find that

these

are not enough, you can add MCTs or coconut oil to them

Sheila