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charleyjesi

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Dec 12, 2013
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CALS
Diagnosis
12/2012
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US
State
California
City
Los Angeles
The feeding tube formula that has been provided (we've tried many different formulas) is causing my grandmother's health decline. :sad: I sometimes give her real food and have been for the last week with great results. :razz: She was no longer constipated and feels so much better without the formula.
But yesterday some medication got stuck in the tube and we had to go get it replaced. :shock:
The doctor at the hospital says to "never put real food down the tube, only use formula." :mad:
But anytime she gets the formula, she feels horrible and it hurts me to see her this way and I know that she feels better with real food. :cry:
I need to find a doctor in the Southern California area who would tell my grandmother that it's okay to put real blenderized meals down the tube.
Anyone use real food or have a doctor who recommends real food?
 

lgelb

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If you look at the posts here, you will see that many use real food. Why do you need to get a doctor's approval? Just state that you are using real food and that is that. Search the Web for recipes, apart from this forum, and you will find hundreds. You will also find many hints for avoiding medication clogs, from warm water to diet Coke. I assume you are crushing any tablets in water before putting the liquid into the tube?
 

Diane H

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Joined
Sep 28, 2013
Messages
637
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PALS
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11/1985
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IN
City
Fort Wayne
You don't need permission to switch to blenderized food, you just need an extra good blender. Most often recommended seems to be the Vitamix but there are others that can also go the extra step from blenderizing and pureeing food to actually completely liquidizing food. If the food is truly liquid it will be no more likely to clog a tube than formula as long as the food doesn't have a lot of gluten to turn gummy. Add water so it flows well and flush well. Meds have to be crushed to a powder and put in water. Some meds are hard to crush and letting them sit in the water for an hour or so will turn them to mush. Don't give fiber supplements or laxatives through the tube. Nutition is important but don't go crazy with the idea. Nothing has shown the diet affects ALS other than preventing weight loss. Regular family meals and familiar foods are fine and it is easy to slip in extra veggies and fruit juices for the previously picky eater.
 

charleyjesi

New member
Joined
Dec 12, 2013
Messages
7
Reason
CALS
Diagnosis
12/2012
Country
US
State
California
City
Los Angeles
If you look at the posts here, you will see that many use real food. Why do you need to get a doctor's approval? Just state that you are using real food and that is that. Search the Web for recipes, apart from this forum, and you will find hundreds. You will also find many hints for avoiding medication clogs, from warm water to diet Coke. I assume you are crushing any tablets in water before putting the liquid into the tube?

It's my grandma who needs to be told by a doctor it is okay because she is a 'good girl' and won't do anything the doctor already told her not to do. The doctor says no and she's sold, that's it. But we can see that it causes her more mucus and constipation that wasn't happening with the blended food we were already giving her. I hope to find a doctor who would say it's okay so that grandma will go ahead and do it, otherwise she won't. I know it is her ultimately her choice what she gets fed, but it hurts to see her suffer unnecessarily. It would be easier not to have to keep trying to talk her into it and her get mad at us for even asking. We are crushing tablets in water, we found out it wasn't us who got them clogged but one of her other caregivers.
 

charleyjesi

New member
Joined
Dec 12, 2013
Messages
7
Reason
CALS
Diagnosis
12/2012
Country
US
State
California
City
Los Angeles
You don't need permission to switch to blenderized food, you just need an extra good blender. Most often recommended seems to be the Vitamix but there are others that can also go the extra step from blenderizing and pureeing food to actually completely liquidizing food. If the food is truly liquid it will be no more likely to clog a tube than formula as long as the food doesn't have a lot of gluten to turn gummy. Add water so it flows well and flush well. Meds have to be crushed to a powder and put in water. Some meds are hard to crush and letting them sit in the water for an hour or so will turn them to mush. Don't give fiber supplements or laxatives through the tube. Nutition is important but don't go crazy with the idea. Nothing has shown the diet affects ALS other than preventing weight loss. Regular family meals and familiar foods are fine and it is easy to slip in extra veggies and fruit juices for the previously picky eater.

I do need to get permission from a doctor because without it my grandma won't allow us to put blended food in the tube. She screams and cries when we suggest it now because the doctor already said no. She's a good girl and won't break any rules. She is back to her mucous and constipation problems with the regular formula. We really want to give her real food again but she wants to be told it's okay. We have a Vitamix, it works really great. Thanks so much for the tips, we really appreciate it so much :)
 

charleyjesi

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Joined
Dec 12, 2013
Messages
7
Reason
CALS
Diagnosis
12/2012
Country
US
State
California
City
Los Angeles
Thank you both so much for all your help and suggestions. We can't even express how much we appreciate this support and connection :)
 

lgelb

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I hate to be simplistic, but show her posts, books by people who blender-feed; at the Oley Foundation and elsewhere. There are even e-mails of individuals who provide support, and we have some on our forum as well.

Don't take her back to that doctor! Why would you? There are many docs in Cali:)

Just tell her, sometimes doctors are not up with the times, just like a lot of people her age aren't tethered to smart phones, but other people benefit...and that you want her to have the benefit of the latest thinking.
 

Isaiah535

Member
Joined
Oct 7, 2013
Messages
11
Reason
Loved one DX
Diagnosis
01/2013
Country
US
State
Ok
City
Tulsa
I make my husband's blenderized meals. He is on a organic raw plant based diet. Our dr recommended at first the formula and we said no way. we ask if it was ok he said sure as long as you make sure he's getting enough protein fats and calories. He said many people do their own food. And he doesnt see anything wrong with it as long as the patient is happy and doesnt get tube clogged. He is an Muscular Dystrophy Association Specialist. Maybe you can find one of those clinics out there in CA. Would love to share the recipe we have concocted if you like.
 
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