Feeding Tube Drama

[Terri33]

My mother got a feeding tube on Friday, we have had a visiting nurse come & I am in desperate need of advice, we have no information as to what type of formula we should be using/how much and just what her calorie needs are, I have spent alot of time online trying to figure this out, but there are so many options. I have spent most of the day on the phone I have called her gastro who put the tube in, his office said call her primary doctor, his office said to call the visiting nurse, she said she is not a nutritionist, call the hospital, I called the hospital who said she is an outpatient so call the insurance company for a nutritionist covered by her plan, I found one, called & she doesnt have experience with tube nutrition.

I am currently giving her 12-16 oz of resource 2.0 which is 480cal per 8oz.
This is what she was drinking before she got tube.

Any advice would be appreciated.

 

[BarryG]

Terri, welcome to the forum and so sorry about your mom. I think I can help you help her as I have been living with my peg tube for over a year and have been exclusively peg fed since January. There are some online calculators to figure out how many calories a person needs and although they were not developed for PALS they do work and give me results very close to what all three of my dietitians have told me that I should be taking in. Here are a couple that will help:
Calorie Calculator - Daily Caloric Needs
Weight Gain Calculator
When I enter my particulars I specify that my exercise level is every day because even though I don't exercise at all I think (and others have also said) that having ALS is the same thing metabolically speaking.

I am currently taking in 5 8oz boxes of Resource 2.0 per day which gives me 2400 calories. So I am taking in 40 oz per day and am maintaining weight with that. Is your mom losing weight? Is she feeling hungry?

I am surprised that none of your professionals can help you, a nutritionist does not have to know anything about tube feeding to know how many calories that she needs.

Let me know if you have any other questions
Barry

 

[Terri33]

Hi Barry,

Thank you so much for your reply. I wanted to know if you use anything else other than resource, as there are so may different formulas. Have you tried anything else? How much water do you get per day? I am hoping that the visiting nurse assoc. will send us a dietician this week.

She has lost a lot of weight, she was diagnosed 07/08 and was 145lbs at that time, she is 5'7".
Currently she is a 112lbs. Her swallowing is very diminished, the way I figure it she has only been getting approx 1000cal for the last 6-8weeks. I have been pushing for her to get the feeding tube for over 2 months now, finally she gave in and here we are.

Thanks again & best wishes.

Terri

 

[nspoc]

Hi Terri -

My friend Pat has been on 1500 calories (5 cans) of Fibersource HN, from Nestle, for 2 full years. No diarrhea, no gas, no real adjustment. She only takes nutrition by tube.

She is about 5'3" and weights around 150 lbs - she has neither gained nor lost weight in this amount of time.

We feed her 3 times per day, and add water to the feeding bag, because otherwise she does not get enough fluids, even with flushes. Her total fluid volume, including the fluid calculated from her feedings, is about 2700 ml.

Since she is on a ventilator with heated circuits, she gets pretty warm, thus the need for extra fluids.

Beth

 

[Terri33]

Hi Beth,

I guess i am not giving her enough, she really gives me a tough time & will only allow 8oz max at a time, that includes some water. Since it is new we are taking it slowly. Perhaps a lil to slow.

thanks again
T

 

[BarryG]

Terri, I have some IsoSource 1.5 that was given to me by a forum friend and that is good too because it has some fibre that Resource 2.0 does not have but it is not as high nutrition as the Resource. My dietitians only recommend the Resource 2.0 because it has everything in a small package and the fibre can be supplied by adding some Benefibre to the water used for flushing.

I start out a feed with one 60ml syringe of water, then the box of formula and end with at least two syringes of water to flush. So that is 180ml X 5 = 900ml of water per day. That is usually enough but I have just had water if I get thirsty.

Just in the past few days I have been doing soup in my tube. I buy prepackaged and premade ready to eat soups and dump it in my blender to make sure that there are no lumps. Once I have blended it up well I pour it through a strainer into a pot to warm it and add some whole milk (fat is good) so that it will pour and then pour it into my tube. I had some tomato and black bean creamy soup yesterday and it is nice to have something warm that is not vanilla in my stomach.

It seems like all I am doing is eating nowdays but what the heck? Formula, soup, it is all good.

You are right, 1000 calories is not enough. I lost 40lbs before I got my peg and have managed to get back 20 but the best thing that you can do to fight this disease is to keep the weight up so the more that she can do the better. There is no such thing as overeating with ALS.

Barry

 

[nspoc]

Terri,

I am curious - why does she give you a hard time? Are you using a syringe to feed her? That can be annoying. We put the feeding in a gravity bag, hang it up and let it drip in over 45 minutes to an hour. The total in each bag is 1000 ml (formula, water, any extra fibersource, and certain additives like Culturelle and Florastor). Pat is on her computer, reading her Kindle, watching TV or sleeping during the feeding. She does not at all seem annoyed by it.

We used to use the syringe - but it was a lot less convenient than the bag on a pole.

Good luck - Beth

PS - hang in there - it does get easier and become routine. You will be amazed at how much healthier she will be with proper nutrition and hydration.

Another suggestion - we got nutrition consulting through our supplier, at the time it was Walgreens Option Care. We had excellent support through our ALS center, but the dietitian at Walgreens was also helpful. Perhaps you can look around for a more supportive supplier. In our area suppliers were eager to have us as a customer for full time nutritional support. Be careful that your supplier is not selling you their most profitable item.

Get a thorough evaluation and prescription for the right product for your mom.

 

[pepsiman]

Liz always had trouble getting enough calories. It just filled her up and made her uncomfortable. We even had a pump for the last two months but still could only manage about 12-1500 calories a day. She never really lost much weight though until very late in October or early November.

 

[indigosd]

Nestles Complete is used by many PALS. I believe that tube feedings and supplies are covered by Medicare if you have a rx-right? It is easier to tolerate the feedings by the pump if it is continuous feed. Is she followed by a ALS Clinic? They have a Nutritionist as part of the team. Keep hanging in there and thank you for being such a loving CALS!

 

[Terri33]

Thanks for all the support, today we have another dilemma, a very bad urinary track infection. The Dr. prescribed antibiotic & pyridium. The antibiotic is liguid so i can put it through the tube, the pyridium can be crushed, but as you may know it is a bright orange color & i am afraid to put it through the tube, I don't want to risk dying/staining the tube. Any thoughts?

T

 

[serenade]

I lost 27lbs due to medication reactions and the doctor wanted me to gain weight he prescribed
4 cans Jevity
3 cans Osmolite
I use 1 of each at 8 am and 8 pm
The remaining 3 cans I space out over the day
I have extra supplies and would be glad to send you some until you get things straightened out just message me.


Judy

 

[linray]

Hi Terri,
My husband has been on a feeding tube almost a year. He takes 4-5 cans of Pulmocare a day and also still eat some solid food. I am very surprised that the Docs didn't tell you what to use and how much. I see that you are in Lincroft NJ. Have you been in touch with the Joan Dancy Foundation for ALS? They are a private organization created to help PALS and CALS in Monmouth and Ocean countries. You should contact them...they are fantastic and have helped us in many ways. You can search for their website. If you need anything else, please ask

 

[strikeout]

Terri,

I am echoing Lin's advice to contact Joan Dancy and Pals. Pat is the ALS nurse there and I'm sure she can help you. Incredible organization and we are blessed to have them in our area.

 

[jennbenn]

well they told my husband when we got his tube that it WILL get stained... I say put it in... a little discoloration is a small price to pay to rid your mom of the discomfort shes in.

 

[hopeful warrior]

I'm with JennBenn. A stained tube is a very small thing. My husband takes Isosource from Nestle. His first formula was Jevity but had digestive issues with that.