Not Enough Calories

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SKlocinski

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Lost a loved one
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02/2016
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Summerville
Tom had a PEG tube put in 3 weeks ago. The dietician and the speech therapist both encouraged him to take as much by mouth as possible. The dietician wants him to have 2000 calories a day, half from regular meals and half from Ensure, either by mouth or by tube. He started out well, drinking 3 Ensures daily and having breakfast and lunch. Then he started sometimes skipping one of the Ensures. We used the tube for feeding once and he said he didn't want to do that every day. Today he asked me if I would help him with the tube feed. The problem that we are having is that he is severely malnourished and doesn't have much appetite. He also gets full very quickly. Even if we put the Ensure in the tube he still has the problem of fullness. He ate dinner tonight but he is still short one can of Ensure and says that he doesn't want it...tube or drinking it. He also did not eat his breakfast this morning...just ate some pudding instead. I'm unsure where to go with this. I don't want to make him sick by overdoing it but I know he is not getting enough calories. Any suggestions? Other than several small feedings? I have tried to convince him to take that approach and he's not having it.
 
the two main ways to increase calories is
1. feed more amount in each meal
2. use a higher calorie peg feed

So if you are using something that is 1 calorie per ml, you can switch to say ensure plus which is 1.5 so you are getting 50% more calories per serving.

It's really hard, I had the same - Chris still would/could not consume anywhere near enough calories per day and continued losing weight.
 
the two main ways to increase calories is
1. feed more amount in each meal
2. use a higher calorie peg feed

So if you are using something that is 1 calorie per ml, you can switch to say ensure plus which is 1.5 so you are getting 50% more calories per serving.

It's really hard, I had the same - Chris still would/could not consume anywhere near enough calories per day and continued losing weight.

Actually we are using the Ensure Plus. I am thinking about getting Extra High Calorie Boost (500 calories per 8 oz as opposed to 350) and giving that a try. Tom doesn't like the taste of Boost but I guess if we put it through the tube that won't matter. Or maybe when we go to the ALS clinic next week they will prescribe him some high calorie formula.
 
yes, put the really high calorie through the peg - make the feeds as slow as you can to prevent him feeling suddenly bloated.

You can add things like coconut oil which is really high calorie to boost things a bit too.
 
My pals did not want tube feeds. He got the peg for meds and only used it a dozen times in 2 years. He didnt like using it and felt it took independence away. We did smoothies, thickened /blenderized soups, pudding, etc. It all depends on what they can get down. Steve got to where he couldnt suck down a smoothie even with a wider straw and it being moderately runny. I put a scoop of protein, fruits, juice,greek yogurt, cream, etc in these things depending on what he felt like. He loved a fresh pineapple, orange juice, yogurt,honey,icecream smoothie.
 
My sister was in near starvation mode when she got her tube. Her case was different in that she could take very very little orally so her nutrition was through the tube. However the fullness issue seems the same. She needed to do her feeding extremely slowly with a pump. Gravity feedings were just too much. As she became better nourished she ended up using the pump still but episodically during the day in a semblance of meal patterns. She was able to tolerate more faster but it took some time and patience to get there
 
When I got my peg in early December I had a horrible time with it. I was in the hospital and in one week went from 141 lbs to 129 lbs. I had no appetite at all. I was (and still am) eating blenderized foods as well as supplementing with boost very high calorie in my tube. What turned everything around for me was when my PCP prescribed me an appetite stimulant called Megace (the generic is Megestrol) 625mg oral suspension. I take 5ml daily in my tube. Within a week my appetite was raging! I've gained back all the weight I lost plus a few more pounds. I average between 2,800 and 3,000 calories per day but I must tell you buying the Vitamix Blender made all the difference once I got my appetite back. I have steak and potatoes, beef stroganoff, lobster bisque, Maryland Crab Soup, baked steak with mashed potatoes and gravy, pretty much whatever my family has I can have in my Vitamix.

Feeling full after not eating much and skipping meals and loss of appetite is very dangerous. You need to get these issues resolved as soon as you can. We Pals lose weight very, very fast. We have to get those calories in.

My very best to you.

Vince
 
Hi SK,


Ensure Plus can feel very heavy in the tummy when PALS first start taking it, especially if put directly into the stomach. I also agree that giving it slowly for the first few weeks will give Tom’s digestive system time to adjust to it.

Given that he can still eat, he can kick start the digestion process by eating something light (even a cracker, if he safely can) at the same time.

I too get half my calories orally, rest through PEG.

Ells.

@ Vince – room at your table for one more?? Lobster! Crab! I’m there :)
 
My dad lost his appetite from taking Rizulole. It's important to find out quickly what's causing the appetite loss. He lost weight so rapidly over a three week period that it took twice as long to get it back once he stopped the drug. We had to beef up everything he ate or drank but once he got back to where he was he actually gained more.
 
I'm one month into my peg tube. Before I was eating, but too slowly and losing weight. I was also dehydrated, so I figured a tube would be a good idea. Now, I get all my nutrition from Jevity 1.5. I still have an appetite, but my tongue has completely atrophied, and the muscles around my mouth have shrunken, so that when I chew, I bite my lips and tongue, and the food never gets masticated. I'm trying to build up with soft foods, but it's tough. I can still swallow, but I have to be very careful. What fun.
 
When I got my peg in early December I had a horrible time with it. I was in the hospital and in one week went from 141 lbs to 129 lbs. I had no appetite at all. I was (and still am) eating blenderized foods as well as supplementing with boost very high calorie in my tube. What turned everything around for me was when my PCP prescribed me an appetite stimulant called Megace (the generic is Megestrol) 625mg oral suspension. I take 5ml daily in my tube. Within a week my appetite was raging! I've gained back all the weight I lost plus a few more pounds. I average between 2,800 and 3,000 calories per day but I must tell you buying the Vitamix Blender made all the difference once I got my appetite back. I have steak and potatoes, beef stroganoff, lobster bisque, Maryland Crab Soup, baked steak with mashed potatoes and gravy, pretty much whatever my family has I can have in my Vitamix.

Feeling full after not eating much and skipping meals and loss of appetite is very dangerous. You need to get these issues resolved as soon as you can. We Pals lose weight very, very fast. We have to get those calories in.

My very best to you.

Vince

I will ask the doctor about Megestrol when we go to the ALS clinic next week. We are switching from the MUSC ALS clinic to the VA ALS clinic so this will be our first time seeing them
 
My dad lost his appetite from taking Rizulole. It's important to find out quickly what's causing the appetite loss. He lost weight so rapidly over a three week period that it took twice as long to get it back once he stopped the drug. We had to beef up everything he ate or drank but once he got back to where he was he actually gained more.

Tom has been losing weight for almost a year. Before he was diagnosed we kept bringing that up to all of the doctors we spoke with and they all just kind of shrugged their shoulders. After he had breathing problems and wound up in the hospital we asked for the PEG tube.
 
My dad lost his appetite from taking Rizulole. It's important to find out quickly what's causing the appetite loss. He lost weight so rapidly over a three week period that it took twice as long to get it back once he stopped the drug. We had to beef up everything he ate or drank but once he got back to where he was he actually gained more.

Tom is not on Rizulole. He just got the PEG and is just starting NIV so we decided not to throw Rizulole into the mix right now, especially since one of the side effects can be fatigue...and Lord knows he doesn't need any more of that. Now that you tell me about loss of appetite as a possible side effect that is even more reason to hold off. The MUSC neurologist at the ALS clinic claims she has never had a patient that had side effects from Rizulole....
 
I'm one month into my peg tube. Before I was eating, but too slowly and losing weight. I was also dehydrated, so I figured a tube would be a good idea. Now, I get all my nutrition from Jevity 1.5. I still have an appetite, but my tongue has completely atrophied, and the muscles around my mouth have shrunken, so that when I chew, I bite my lips and tongue, and the food never gets masticated. I'm trying to build up with soft foods, but it's tough. I can still swallow, but I have to be very careful. What fun.

Tom also has tongue atrophy and trouble manipulating food so he can chew it. If he bites his lips and tongue, he's not mentioned it. He still eats but not as much as he should. Both the speech therapist and the dietician encouraged him to take as much food orally as he can but like you, he finds that difficult.
 
I eat explicitly through my peg tube. In the beginning I was eating 4 cans of osmolite 1.0 then they switched me to 2.0 which is much thicker and I get very full after each can, I only have 2 cans a day
 
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