ALS For support and discussion of Amyotrophic lateral sclerosis (ALS), also referred to as "Lou Gehrig's Disease." In memory of BobbyB.


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Old 05-23-2007, 08:53 AM #1
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Default what to put in my new feeding tube ?

now that i have it what can i put in it to put on weight ?

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Last edited by BobbyB; 05-23-2007 at 10:55 AM.
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Old 05-23-2007, 10:28 AM #2
Curious Curious is offline
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hi bobby

i did some searching. what i found was that you can pretty much put anything in..that you can puree with a blender. just remember to not use more food at a time than your dr reccomends.

are you still able to to swallow? i did find this site with recipes that are easy to swallow

http://www.easytoswallow.co.uk/index.htm

i'll keep looking.
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Old 05-23-2007, 11:34 AM #3
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((((((Bobby)))))),

I was wondering why this looked familiar -- I think I need more Cherry Coke

I just answered you on the other side of town:

Quote:
A lot of the parents in the Child Neuro forum have experience with enteral feeding. You might want to ask for suggestions.

You might find the information here helpful too:
http://endoflifecare.tripod.com/juve...ase/id211.html
http://endoflifecare.tripod.com/juve...ase/id213.html
(If you notice any links that don't work and you're interested in reading something, let me know. I'm pretty good at finding other versions of 'stuff'.)

Of course, anything that you find on the internet, or via Moose-messaging (), should be verified with your doctor(s).

Hugs.

Barb
More hugs.

Barb
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Old 05-23-2007, 12:01 PM #4
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Bobby

If you want information that is complete and informative ask Lisa. That woman is a marvel as to what you should and should not use. She is posting still on Alstdf. Wish she would come here.

Glad you are feeling up to wanting food so soon. Did it go as you had hoped? We so need members to start posting as they once did and if this is not the spot then there is no other.

I know she didn't like the editing that was done here but it has changed and I don't think Doc John would ever be so strict again.

It is hard to realize the distinct problems faced by Pals and Cals and it only required him to hear it once. This is a good site and he is a good man who over the years has proved his honesty and caring. We had caring and concern before we just didn't have honesty.

Glad you are okay again

Regards Thelma and give our thanks to your wife. .
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Old 05-23-2007, 04:21 PM #5
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Hi Bobby,

I've been using a feeding tube for almost 2-years now. I'm 6' 4" and have actually managed to "fatten" myself up a little. You can be creative, but I have been boring with my cuisine, choosing a total daily diet consisting of 6 cans (8.45 fluid ounces each) of Nestle's Nutren 2.0 Complete Calorically Dense Liquid Nutrition, 6 scoops of whey protein by Resource Beneprotein Instant Protein Powder, 6 scoops of Bennefiber and 5,000 cc's of water.

Everything goes through a Kendall Kangaroo Gravity Feeding Set, which is basically a 1,000 cc gravity feeding bag whose flow rate can be controlled.

My routine is this:

when I wake up 1,000 cc's of water

about 2 - 2.5 hours later a mixture of 2 cans Nestle's Nutren 2.0, 2 scoops of whey protein, 2 scoops of bennefiber, and 300 cc's of water.

about 2 - 2.5 hours later 1,000 cc's of water

about 2 - 2.5 hours later a mixture of 2 cans Nestle's Nutren 2.0, 2 scoops of whey protein, 2 scoops of bennefiber, and 300 cc's of water.

about 2 - 2.5 hours later 1,000 cc's of water

about 2 - 2.5 hours later a mixture of 2 cans Nestle's Nutren 2.0, 2 scoops of whey protein, 2 scoops of bennefiber, and 300 cc's of water.

about 2 - 2.5 hours later 1,000 cc's of water

I "vent" (opening the tube and letting stomach gas escape) my tube before each hydrating or feeding (or whenever necessary) by connecting an empty (extracting its syringe) feeding bollus tube to the g-tube to avoid making a mess and letting the gas escape.

Talk to your nutritionist and work into a comfortable routine. With me I found the additional water and the addition of Bennefiber helped to avoid constipation. Also if you discover that your bowel movements are too loose add a few scoops of dried banana flakes.

Basically it's a period of trial and error.

Good luck!

Peace, love and energy,

Agios

Ps Luckily my insurance covers everything.
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Old 05-26-2007, 12:13 PM #6
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Hey Bobby,
Hope the tube feeding is going well..don't know if you are using it for supplemental reasons or for complete nutrition...but there are a variety of things that can be put in it..including crushed meds ...hydration ( water , juice etc) and regular ( pureed) foods..
I don't know if docs have drawn blood work for nutritional needs or imbalances...if electrolyte balnces or other problems of specific deficits were found...docs working with a dietician may make a specific recomendation based on your particular individual needs ...otherwise it whatever you want to try as long as it is not too thick.....
If you need it for the only source of nurition Medicare will pay for it with a docs script..but the doctor wil have to recommend a specific formula and amount..
Best wishes..Lisa

Last edited by lisag; 05-26-2007 at 01:07 PM.
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Old 05-27-2007, 07:03 PM #7
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Old 05-27-2007, 08:02 PM #8
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Hey, ((((((Bobby)))))),

You got a whole bunch of cute relatives

I still think you're the hottest guy there


Barb
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