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RhondaRP

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CALS
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Texas
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Austin
My mom has had her feeding tube for a few weeks now and is MISERABLE. She has nothing by mouth and is constantly nauseated from the feedings. Just when she starts feeling a little better, it's time for another feeding. We've tried 3-4 different types of formula, continuous feed (for slower times), gravity feeds, watered down, etc. She loves buttermilk (and that always used to settle her stomach) so we've tried mixing it w/formula, yesterday we starting mixing yogurt w/formula. NOTHING is working. I feel so bad for her. She said the other day, "I feel like I could do so much more, if I wasn't constantly sick to my stomach." Nurse suggested Baby Rice cereal and/or banana baby food. Any suggestions? This diagnosis is new to us, so we're trying to figure it all out very fast. Thanks,
Rhonda
 
Have you tried reducing the volume of the food/formula + water at each feeding?
Try cutting in half and see if it helps, and then gradually increase the amount.

My husband complained about nausea when he started taking most of his nutrition through the PEG. Reducing the amount helped him.
 
Thanks for the response. I'm afraid that won't be enough nutrition and/or calories...how did you figure that out? Wonder if that's the trade-off...enough nutrition vs. no nausea?
 
It took weeks of experimenting to find something that worked for me. Turned out speed was the biggest issue - I have to use a pump to get it in slow enough. I do most of it overnight - really slow for six hours. Have to make sure your head is up at least 30 degrees, but the very slow entry solved the problem. The added bonus of overnight feeding is not being tied to the pump all day and having more freedom.
 
Wow, they are trying to get me to get a PEG, I am still eating OK, don't want to go through that until I have to, prayers for your mother
 
I wouldn't worry about nutrition right now. The goal is to get her to tolerate even a small, slow feeding and then try to increase them. There is a medication, Reglan, that helps speed stomach digestion to reduce nausea fullness. It can only be used for a few weeks but may help get her on track. A gastroenterologist may know of other meds with less restriction on use that might help.
 
Jamie, don't put off getting a PEG.Having one doesn't mean you have to stop eating. I have had one for years and still only need it to get meds down easily. But it is also terrific for staying well hydrated and very convenient for a quick meal when in a hurry. Putting it off until you really need it means you will be malnourished, dehydrated, and have low respiratory status. All of that complicates what should be a simple procedure.
 
Rhonda,
Unless your PALS has already lost a lot of weight, reducing the amount of nutrition for a few days is not going to do major harm. You reduce it just to see if it helps and then slowly bring it up to the necessary amount.

Janie,
If you plan on getting a feeding tube, it is better to get it while your breathing is still good. My husband got his almost three years ago (his neuro recommended he get his PEG before his FVC goes below 50%, so he did it). He did not use it for food for more than three months. We just flushed it with 8 oz water every day. (Our kids called it "tube watering", and that is still how we refer to feeding their dad through the tube :). He started with one can of Jevity per day, and over the course of almost two years he added more as he reduced the amount he ate normally. He is on 6 cans a day now, and no normal eating. The dietician recommended 6 - 7 cans, but he can't tolerate more than 6.
 
Thanks, Diane and Rhonda, my breathing is getting worse fast, I go to the clinic on the 20th, I will make plans to go ahead even though I am eating fine. I do not think my lungs are going to get better.
 
My wife ( who was buried on Saturday) must have been one of the fortunate ones as she had no problem whatsoever with her peg.

She had it installed in September of 2011 and the last feeding was the day before she died November 27.

At the end , she received all her nutrients from it.

Our schedule was as follows...........8:00 am.....1 cup luke water mixed with her perscriptions followed by one can nutrient 1.5 and one can Jevity 1.0( 1 1/2 luke warm water rinse

...................................................noon...same procedure but only 1 can nutrient 1.5
...................................................5 pm....same procedure with only 1 can Jevity 1.0 and stool softener added to cup of luke warm pre-rinse

All her feedings were gravity flow and we had no problems whatsoever in nearly 2 years.
 
Thank you all so much. We got some Reglan today, so hopefully we'll get the nausea under control. We're trying the continuous, very slow night feed (Jevity), baby rice cereal and bananas during the day. And as most everyone has said...lots of water (WARM seems to make a difference too). This is the hardest thing I've ever seen to watch my beautiful independent mother get so sick so fast. God bless you all.
 
My PALS finds everything going in the peg warm helps him.

Can your mother eat anything at all?

We have found if he eats even 6 teaspoons of yoghurt or anything he can eat, he gets far less or no nausea. We have had to ramp up his peg feeding as he is at starvation point but was controlling what I could give him and when. Now he has handed me the control and it is difficult to get enough into him.

I think there can be 2 causes here, I could be wrong, this is my observation and summarising from talking with health professionals:
1. Eating is not just pumping food into a stomach, it is smell, saliva, swallowing begins stomach to prepare and 'wakes up' the digestive system. Some people seem to have a 'cast iron stomach' and tolerate pegs quickly. Others take time and the 'right' formula to get digestion changed over to 'eating' without any of the above.

2. If the PALS becomes malnourished due to waiting to long and their stomach shrinks, and doesn't expect much food at a time.

In both cases, feeding smaller amounts, plenty of warm water will help, and as I said eating even a little by mouth first can help the first point.

Increase the amount a little at a time but don't reduce the frequency until she starts to either level her weight out or starts to put some weight on.

Easier said than done, believe me I know, I'm going through it now with my own husband.
 
Thanks for all these suggestions but nothing seems to help my Mom's nausea. Yes, it has gotten a little better with slow continuous feed pump on and off at different times, baby rice cereal and bananas, warm water, meds (Reglan, Zofran, etc). But she just still can't get through a day without feeling nauseated. It's been almost a month since the tube was put in. She has nothing by mouth. I'm just wondering...is it still trial and error? And what IF she just can't tolerate the canned food (we've tried 3-4 different ones,would she be okay with just pureed stuff...oatmeal, rice, bananas, etc? I feel so bad for her. I'm losing sleep over this-any suggestions will help! Thank you!
 
Rhonda,
As Eric noted in another thread, there is a case to be made for "real food" but blenderized. And partly that goes back to what a stomach needs to "wake up" as above.
If, when she could swallow, your mom wouldn't have felt very good eating the bland foods you mentioned, or the formulas you've tried, real food that she used to eat in a tube-friendly form might be more the ticket.
Aroma and seasoning, which bland foods and formulas will lack, are natural gastric stimulants if you will.
 
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