blender recipes for tube feeding/ do's & don'ts

[papa65]

HI! These are a few things I've found out in the 6 mo or so since I've had mine. :-D
1st - if you put in enough liquid you can liquify ALMOST anything. Some things I've put into my OATMEAL SHAKE are; 2/3 cup oatmeal, water or milk, plus 1 multivitamin talet, sugar (lots, Ineed the extra sugar) and meat, Spam or vienna sausage.
2nd - DO NOT try putting in fresh (seedy) grapes, the seed can (& has for me) plugged the opening. THIS CAN BE TAKEN OUT WITH A PAPER CLIP. NO Raisins! The skin won't liquify for some reason
3rd - Ramen noodles, 2 min in microwave - add spam or vienna sausage.
These are filling, but take some experimenting to get to the correct thinness. I've also tried tuna! Right out of the can, it's almost thin enough, doesn't need much time in the blender.
Thats all I can think of that I've done. OH by the way - for travel I take 3 or 4 cans of 'formula' - 2 disposable glasses, 1 60 ml syringe, and some paper towels, in a little Sterlite Showoff case. I don't remember where I got it at. They come with a snap on lid with a handle for easy carrying. This is for LOCAL TRIPS ONLY. For long distance, ie overnight, i just take that & a box of more cans. A tiny bottle of h20 or juice fits right in too, so I usually have everything I need to feed, right with me.
Find your nirtch - fill it & flourish!:-D:-D

[BethU]

Great advice! You're much more adventurous than I am. I love the Spam and Vienna Sausages ... used to love those little sausages.

The Spam reminded me that Spam is now being used in sushi, which I think is a hoot, and that reminded me that tofu would make an excellent addition to a shake or mixed meal. Extra protein, it's made out of soybeans, which are VERY healthy, and with a tube you don't have to taste it. :-)

[joelc]

Making your own meals instead of using formula is the way to go! I hated any formula and my stomach was always upset and I always felt sick. Then we decided to blend up whatever my wife was cooking and my problem went away. We found that you have to have an exceptionally good blender or there will be problems. We purchased a Vita-Mix and it works fantastic. It is commercial grade and bullet proof.

[DgtofTNfan]

I am so glad this thread was started as I was about to ask. My Dad has not tolerated his tube feedings since the insertion. We have went through a trial of ...it is probably the IV abx, give it time, he might have Cdiff, give it time, try this anti diarrhea med, give it time, check for Cdiff again, stop this med, change the tube feed., yada yada. We got fed up and stopped the tube feeds.

Wala, no more diarrhea for a week . So now we are trying to figure out how much of what equals the amount of calories he needs. A formula so to speak that keeps Mom from calculating each meal to ensure he is getting enough calories for the day. We are hoping she can blenderize a concoction and divide up in equal portions for the day.

I am looking for foods that are high in calories and low in volume. Did you know that 1 tbsp of Olive Oil has 120 calories? If anyone has any recommendations, please throw them my way. So far we have used raw eggs, yogurt, bananas, potato soup, protein powder, 1 can of Jevity, etc. but we have not got to the 1800 cal recommended by a dietitian I spoke to.

Mom and I have been playing with some concoctions and giggling. Dad says if he hears us chanting or he sees smoke, the tube is staying clamped!

Joel, I have read that several people like yourself and this Lucy person on this website http://lucysrealfood.com/entrees.htm are actually putting just about anything in the tube including meat. How does this not clog the tube? Does your Vita Mix blender do the trick or are you straining food before putting in the tube? Help me, I'm skeered! LOL!

Has your tube been clogged? If the tube gets clogged, how easy is it to unclog with Coke or something? If you are unable to get rid of the clog what is involved in replacing the tube? Your input is appreciated.
Thanks.
Dana

[joelc]

Dana, that is a benefit of a good blender. It will blend up any food, including meat, without a problem. No clogs yet.

[BethU]

Hi, Dana ... I'll jump in if I may. I'd avoid raw eggs. Maybe scramble them first (you can do quickly in microwave). For added calories, try Haagen Daas ice cream ... 400 calories (I think it is) for 1/2 cup of vanilla. Olive oil is good ... not only calories but good for the heart.

If you ever want a quick shot of calories with no fussing, a small chocolate shake from Burger King has 700 calories and (I think) 20 grams of protein.

As to clogs or blockages: I get them, and they seem to be mainly from hitting a pocket of air, and also my stomach seems to process food slowly. I've never had one I couldn't fix. Sometimes just moving the tube gently back and forth does it. (You'll get a lovely belch sound when it clears!!) Coke works wonders. Always flush with water before and after feeding (I'm sure you do that anyway).

If all else fails, use the plunger. (I just use gravity, and can do many of my feedings standing up when I don't feel like fussing. The fastest way is to take the feeding lying down. The stuff really zooms down.) The plunger takes more strength than I've got most times, but there is no clog that can stand up to it!

Maybe I get clogs because I am still eating frequently by mouth, and therefore there is food in my stomach that is not as pulverized as tube food. I've learned to wait a while (half hour or so) after eating by mouth before using the tube. Sometimes I will start out by mouth with something delicious, then start choking, etc., so I wait a little while, liquify it if it needs it and finish by tube. The best of both worlds!

As to replacing the tube: That shouldn't be hard to do if necessary (but I bet it is rarely ever needed). Where the tube enters the body, there is a cross piece on the outside which we can see, and right inside the body, there is a similar flange (like a Molly bolt) that opens up when the tube is placed. That is the only impediment.

Hope this helps.

[DgtofTNfan]

Joel, My Mom had heart palpitations when I told her how much the Vita Max cost. She was impressed that it was bullet proof though. :) Our blender was $14 at Walmart. We are just getting started and will probably need to upgrade to one that is more durable as so far we have been choosing easily blendable foods and need to expand our options.

Beth, thanks for the tips on the quick calories and for using the tube. Please feel free to jump right in with your opinion for me anytime. I am looking for help from all perspectives and yours input is valuable!!

Wondering if you have trouble with reflux when lying down for tube feeds. We have been told by a couple of people to make sure Dad stays upright for 30 minutes after tube feeds to prevent aspiration?

We have mentioned the raw eggs to several people and the reactions are mixed. We are using the organic eggs (cost a little more but decreases the chance of salmonella). We have not tried to scramble them for fear of clogging the tube but I am now wondering if we half cook them in the microwave as you mentioned and left them slightly cooked if that would help.

Thanks!
Dana

[BethU]

Dana ... never had any reflux, but I use a couple pillows to prop me up when I feed lying down. But you're very right ... aspiration is still a danger, even with the tube.

I would think the blender could pulverize scrambled eggs along with the rest of the food. My blender is run of the mill, but does a great job on solids like fresh fruits for smoothies, so I'm sure could handle moist scrambled eggs.



Speechless in L.A.

[DgtofTNfan]

Thanks Beth. Mom will throw the eggs in the microwave in the morning and give it a go.

[joelc]

Joel, My Mom had heart palpitations when I told her how much the Vita Max cost. She was impressed that it was bullet proof though. :) Our blender was $14 at Walmart. We are just getting started and will probably need to upgrade to one that is more durable as so far we have been choosing easily blendable foods and need to expand our options.

Thanks!
Dana

LOL I totally understand your moms reaction! I did the same and after destroying several inexpensive blenders and being frustrated with their performance, we got the Vita-Mix - there is absolutely no comparison. It can do anything we want, even cooks food while blending.

[DgtofTNfan]

even cooks food while blending

If you tell me it also goes to the store and buys the food, I will buy one immediately!!! :grin:

[joelc]

Lol.........

[clewbcg]

My pals is getting a tube on this friday, and I'm trying to get as prepared as possible. All of the above tips are very useful, but I'm wondering one thing. If you aren't tasting the food then why not just use the canned supplements? When we met with the doctor he didn't mention normal food at all. My husband can eat a little by mouth but most of it stays in his mouth or comes back out. I know he will want to continue to have smoothies and things by mouth until he can't any more, and I thought we would just use the high calorie supplements with fiber. Is there less constipation with normal food than with the cans? He is already having alot of trouble with that. Any answers would be so appreciated. Thanks.

[joelc]

If you mention to a dietitian or doctor you plan on doing your own food they will go nuts! The reason to do your own was, in my case, because the formula made me sick. Not everyone can tolerate formula. Also, your insurance might pay for the formula so that would be a good reason to try it. I had to pay for mine so it was cheaper to do our own and I was used to my wifes cooking.

[DgtofTNfan]

clewbcg

My Dad started with the canned tube feeds that are recommended. He was not able to tolerate the tube feeds - note that he has a history of pancreatitis as well as the ALS-and had diarrhea.

The canned supplements would be preferred in my opinion for a number of reasons
1) Convenience (so much easier to pop a can and so much more portable)
2) Sanitary (blender needs to be kept clean and less handling of food)
3) No clogging (some items still need to be strained after blending to prevent clogging the tube)
4) Recommended daily allowance of what the body needs is easier to calculate and follow for weight maitenance and gain.

Most people tolerate the tube feedings just fine. There are a couple of people on here in a race to see who can gain weight the fastest and are thriving with the new PEG.

I wish your husband well with his PEG on Friday and that he continues to enjoy the food of his choice and lets the tube do all the work.
Dana

[clewbcg]

Thank you for the great answers and tips. Pals has been having ensure, instant breakfast (and something called two cal which he would only drink once, but is hi cal and would be good for tube feeding since he won't have to taste it). However, it was $50 for 12 cans. He has tolerated all these well so hopefully he will continue to do okay when he gets them by tube. He has lost a lot of weight since last year, and i'm hoping this will stabilize with the tube. Insurance hasn't been paying for the ensure so far, but maybe after the tube is done?

[BarryG]

clewbcg, just wanted to say Hi. We visited your area last year at about this time and stayed at the Homestead Lodge. It sure is beautiful country around there. We drove down to Moab to see Arches National Park and really enjoyed it.

I have been using a product from Nestle called Resource 2.0 in my peg tube. I haven't tried drinking it because it, like Boost and Ensure, are something that would make me gag for sure. I have had no problems with it by tube however and it really helps me to get the calorie. I take three 237 ml (8oz) boxes per day, my morning smoothie and whatever normal food I can manage to swallow The formula is supplied by our provincial government at a reduced price and I pay about $100 per month at current consumption which is I think about 1/3 of the normal. I am one of the people in the race that Dana mentioned and although I think that I'm behind Thelma's Dad now because I have not gained more weight in the past couple of weeks, I have gained 11 pounds in the two months since I got my tube. I'm sure that no matter what you put in your husbands tube he will gain weight and energy and won't have to struggle as much to eat.

Good luck!

Barry

[thelma313]

Barry you're not behind my Dad at all. He seems to have hit a plateau at the 10-pound mark. He's pretty confident that he'll gain more though. He is happy with the Nestle Resource 2.0 and he is still eating a little by mouth. The list of foods he is able to eat is pretty limited now. He does enjoy a good bowl of my Mom's home-made gnocchi. My Mom adds extra olive oil to his portion and he does eat mashed potatoes, cake and pudding. I'm sure there's more but I can't think of them right now.

It's still anybody's race so keep eating! :)

[BarryG]

Thelma;
Ok, being from a WASP background where my parents thought that pizza was ethnic food (really, I never had one until I was a teenager and bought it myself) can you explain gnocchi to me? Or even better, can you give me your mom's recipe (if it's not a secret lol)? I eat a lot of mashed potatoes with gravy, chili, egg salad, chicken salad, tuna salad, scrambled eggs with alfredo or hollandaise sauce, boost chocolate pudding, and yogurt. My wife also makes a fabulous 6 egg souffle (either cheese or lime) which is easy to eat. I'm so glad that I don't have to worry about cholesterol or I'd really be pooched.

Kind of off the Peg tube topic but whatever, I'm hungry and always looking for new food ideas!

Barry

[DgtofTNfan]

clewbcg
Your doc will write an order for a tube feeding regimen when your husband is discharged with the feeding tube. I am not sure if Ensure is covered since it is available over the counter (OTC) but my Dad's canned food was covered by Medicare. The doctor must write an order for the tube feeding AND document that the tube feeding is his primary source of nutrition and your husband is not able to sustain himself through oral method for Medicare coverage. (Most commercial insurance companies follow Medicare guidelines.) I imagine the doctor already knows this but from my experience docs sometimes need some prompting. :smile:

Thelma and Barry,
I have to say now that Dad has been on regular food for his tube feeds he has gained 2lbs! Finally!!!! So look behind you Thelma's Dad and Barry because here he comes. For what it is worth the GI doc did not expect him to gain any weight but rather maintain - he was wrong before and I am hoping he is wrong again. The dietitian was planning on 10+ so I am hoping he can get to where the two of you are now!

Dana

[BarryG]

Go Dana's Dad!! My local dietitian told me that I wouldn't gain any weight with the tube, I just wouldn't lose any more. When she said that I thought to myself "If I have to have this stupid hose I'm sure as hell going to gain weight with it". Anyway she is young, eager (and cute) so I'm having fun letting her know how much I've gained. I am looking over my shoulder!

[mango]

this is another one of those subjects that I've avoided because I was too afraid to even imagine myself having a feeding tube. But if I decide to try to stay alive with ALS, I'm going to need one, and I'd like to stay alive longer than I first imagined I would.

I had wondered to myself if people had to use a formula, or could they blend something and pour it down. Now I know. :)

[BarryG]

Mango, if I have any advice to give it is this, Don't fight the tube! I know that it isn't an appealing step to have to take but I also know that I would probably not still be here without it. Never give up, never surrender.

[BethU]

I had no idea that Medicare would pay for the nutritional supplements !! With my husband and I both existing mainly on supplements, we're putting away 6 containers a day, and it's adding up $$ pretty quick.

This Forum is great. In 24 hours, I've learned how to clean my BiPap (thanks, Rose !! As of today, I'm germ free :lol:) and hopefully get reimbursed for our supplemental food.
__________________________

A sign of the times: This doesn't belong on this thread, or anywhere else, but yesterday morning, I saw a neatly dressed elderly couple (white hair) going through the recycle trash cans out on the street awaiting pick-up. You don't see that in suburbia too much. Actually, I've never seen it before here. While I was dithering about what to do (Take them money? Take them my recyclables? It's that ALS lack of executive function again) they drove off. Makes me verrrrrrrry grateful that Paul and I can still afford food supplements, even if we can't eat steak any more.

[danjay]

Folks - missed this thread earlier. Here is my simple trick to get more natural food easily. I take a can of soup, lentil vegetable or split pea, black bean and vegetable, rarely with meat as I don't have a super blender. I just open it and dump it in the blender with half a can of water and blend it to death. I split that in two and add a can of ensure to each half to up the calories. Gives me two meals and I can do it all myself still.
Dan

[rose]

Beth, I know what you mean about reality checks for the hard times so many now face! And, I too was amazed at how expensive the ensure and other similar brands are. Its good to know that medicare will pay.

Dan, that sound's like an easy method. :)

[brooksea]

So, Medicare will only pay for supplemental calorie "drinks" if you have a PEG. Is that correct?

[BethU]

I'm not sure how this reimbursement works. It sounded to me like if your doctor prescribes it, they will pay, but I don't know if you have to get a specific brand or what. I order our "Resource 2.0" over the Internet. Maybe my ALSA rep will know.

[DgtofTNfan]

From CMS website...

180.2 - Enteral and Parenteral Nutritional Therapy
(Rev. 1, 10-03-03)
CIM 65-10

Covered As Prosthetic Device

There are patients who, because of chronic illness or trauma, cannot be sustained through oral feeding. These people must rely on either enteral or parenteral nutritional therapy, depending upon the particular nature of their medical condition.

Coverage of nutritional therapy as a Part B benefit is provided under the prosthetic device benefit provision which requires that the patient must have a permanently inoperative internal body organ or function thereof. Therefore, enteral and parenteral nutritional therapy are not covered under Part B in situations involving temporary impairments.

Coverage of such therapy, however, does not require a medical judgment that the impairment giving rise to the therapy will persist throughout the patient’s remaining years. If the medical record, including the judgment of the attending physician, indicates that the impairment will be of long and indefinite duration, the test of permanence is considered met.

If the coverage requirements for enteral or parenteral nutritional therapy are met under the prosthetic device benefit provision, related supplies, equipment and nutrients are also covered under the conditions in the following paragraphs and the Medicare Benefit Policy Manual, Chapter 15, “Covered Medical and Other Health Services,” §120.

Parenteral Nutrition Therapy Daily parenteral nutrition is considered reasonable and necessary for a patient with severe pathology of the alimentary tract which does not allow absorption of sufficient nutrients to maintain weight and strength commensurate with the patient’s general condition.

Since the alimentary tract of such a patient does not function adequately, an indwelling catheter is placed percutaneously in the subclavian vein and then advanced into the superior vena cava where intravenous infusion of nutrients is given for part of the day. The catheter is then plugged by the patient until the next infusion. Following a period of hospitalization, which is required to initiate parenteral nutrition and to train the patient in catheter care, solution preparation, and infusion technique, the parenteral nutrition can be provided safely and effectively in the patient’s home by nonprofessional persons who have undergone special training. However, such persons cannot be paid for their services, nor is payment available for any services furnished by nonphysician professionals except as services furnished incident to a physician’s service.
For parenteral nutrition therapy to be covered under Part B, the claim must contain a physician’s written order or prescription and sufficient medical documentation to permit an independent conclusion that the requirements of the prosthetic device benefit are met and that parenteral nutrition therapy is medically necessary. An example of a condition that typically qualifies for coverage is a massive small bowel resection resulting in severe nutritional deficiency in spite of adequate oral intake. However, coverage of parenteral nutrition therapy for this and any other condition must be approved on an individual, case-by-case basis initially and at periodic intervals of no more than three months by the carrier’s medical consultant or specially trained staff, relying on such medical and other documentation as the carrier may require. If the claim involves an infusion pump, sufficient evidence must be provided to support a determination of medical necessity for the pump. Program payment for the pump is based on the reasonable charge for the simplest model that meets the medical needs of the patient as established by medical documentation.

Nutrient solutions for parenteral therapy are routinely covered. However, Medicare pays for no more than one month’s supply of nutrients at any one time. Payment for the nutrients is based on the reasonable charge for the solution components unless the medical record, including a signed statement from the attending physician, establishes that the beneficiary, due to his/her physical or mental state, is unable to safely or effectively mix the solution and there is no family member or other person who can do so. Payment will be on the basis of the reasonable charge for more expensive premixed solutions only under the latter circumstances.

Enteral Nutrition Therapy

Enteral nutrition is considered reasonable and necessary for a patient with a functioning gastrointestinal tract who, due to pathology to, or nonfunction of, the structures that normally permit food to reach the digestive tract, cannot maintain weight and strength commensurate with his or her general condition. Enteral therapy may be given by nasogastric, jejunostomy, or gastrostomy tubes and can be provided safely and effectively in the home by nonprofessional persons who have undergone special training. However, such persons cannot be paid for their services, nor is payment available for any services furnished by nonphysician professionals except as services furnished incident to a physician’s service.
Typical examples of conditions that qualify for coverage are head and neck cancer with reconstructive surgery and central nervous system disease leading to interference with the neuromuscular mechanisms of ingestion of such severity that the beneficiary cannot be maintained with oral feeding. However, claims for Part B coverage of enteral nutrition therapy for these and any other conditions must be approved on an individual, case-by-case basis. Each claim must contain a physician’s written order or prescription and sufficient medical documentation (e.g., hospital records, clinical findings from the attending physician) to permit an independent conclusion that the patient’s condition meets the requirements of the prosthetic device benefit and that enteral nutrition therapy is medically necessary. Allowed claims are to be reviewed at periodic intervals of no more than 3 months by the contractor’s medical consultant or specially trained staff, and additional medical documentation considered necessary is to be obtained as part of this review.

Medicare pays for no more than one month’s supply of enteral nutrients at any one time.
If the claim involves a pump, it must be supported by sufficient medical documentation to establish that the pump is medically necessary, i.e., gravity feeding is not satisfactory due to aspiration, diarrhea, dumping syndrome. Program payment for the pump is based on the reasonable charge for the simplest model that meets the medical needs of the patient as established by medical documentation.

Nutritional Supplementation

Some patients require supplementation of their daily protein and caloric intake. Nutritional supplements are often given as a medicine between meals to boost protein-caloric intake or the mainstay of a daily nutritional plan. Nutritional supplementation is not covered under Medicare Part B.

[thelma313]

Barry, I only noticed your question about the gnocchi today! I wish I could give you the recipe but it's a totally hand-made process and is best when taught to you by an experienced Italian lady :)

Basically gnocchi are pasta dumplings traditionally made with potato. My Mom makes these completely by hand, no pasta machine or anything. I could get the recipe from her but I think it would be easier to find a reputable Italian store that makes fresh pasta where you could buy them. The consistency of gnocchi are perfect for my Dad because they're kind of mushy. My Mom likes to make them with a rosé sauce. It's delicious! I personally have never made them on my own but have assisted my grandmother on many occasions when I was a girl. They are fun to make!

I am not sure if my Dad can still eat them au naturel. My mom now has to blend them a little but he has gained a total of 12 pounds now since getting his feeding tube and I am thrilled about that. This week he's supposed to get his Panasonic Toughbook with Dynavox. He's excited about it!

[thelma313]

I found a pretty good recipe for potato gnocchi. These look a lot like my Mom's...

http://www.annamariavolpi.com/page81.html

[georgia]

I ordered Benecalorie. The difference is amount of calorie in the size. It is 330 per 1.5 oz that's 3 tablespoons. It is neutral taste so you are not limited to 3 flavors. So you can add to blender foods or even canned foods.

I found it at Walgreen's online for $35.99 plus tax if you ordered and paid for it at the store and pick it up there you don't pay shipping or you can have it shipped to you. That's for 24 servings of 1.5 oz containers.
My husband still eats three meals, drinks 2 milkshakes 500 cal ea (which is what we added this to) and desserts and still lost 5 more lbs. It doesn't help he still mows grass. Even if he got a tube we didn't know what else he could eat more than what he was already. We just got it so the amount of weight gain we will see but it is calories without the volume.


RESOURCE® Benecalorie®RESOURCE ® Benecalorie ®

A low-volume, calorie and protein supplement designed to combat significant unintended weight loss. Benecalorie provides 330 calories and 7 grams of high-quality protein per 1.5 oz serving. Benecalorie's neutral flavor allows for flexible serving options and helps reduce taste fatigue. RESOURCE Benecalorie is a Medical Food -- consumers should consult their physician on the use of this product.


# Patients experiencing unintended weight loss
# Patients with increased nutritional needs
# Cancer, HIV/AIDS, COPD, fluid restricted,
anorexia and burns
Not a total feeding


Caloric Distribution:

Protein: 9% (Calcium Caseinate)
Carbohydrate: 0%
Fat: 91% (High Oleic Sunflower Oil, Mono and Diglycerides)
Calorie Density: 7 cal/mL
Lactose-, gluten- and cholesterol-free, low residue, low sodium



Stir single serving cup into foods and beverages. Recommended foods and beverages include milkshakes, nutritional supplements, yogurt, hot cereal and mashed potatoes.




Nutrition Information


Serving Size
1.5 oz.(41.3 g)
Calories 330
Protein

g
7
Carbohydrate

g
0
Fat

g
33
Fiber

g
0
Sodium

mg
15
Potassium

mg
0
Vitamin C

mg
60
Calcium

mg
100
Vitamin E

IU
30
Phosphorus

mg
55
Zinc

mg
3.75

Resource ® Benecalorie® is a calorie-protein supplement and is not for use as a sole source of nutrition.

IngredientsU-D
High oleic sunflower oil, calcium caseinate, mono and diglycerides, sodium ascorbate, polysorbate 80, sorbic acid*, alpha tocopheryl acetate, benzoic acid*, zinc sulfate, methylparaben*, mixed tocopherols, sucralose.

[BarryG]

Thanks Georgia, I'm going to ask my dietitian about it. I could add it to my morning smoothie and give me more calories.

[georgia]

I asked the drugstore if it was the same as Ensure as far as insurance and they said yes.

Nutritional supplementation is not covered under Medicare Part B unless he was tube feed. You would think an oz of prevention would be worth it even if they limited the amount to 1 or 2 a day in the long run would save them money.

[pamnandy]

I love love love all these ideas! Thank you for the insightful ideas! My PALS Andy had a tube put in about 6 months ago, and it's great for meds, but just recently he has decided to stop eating. The swallowing is just getting too hazardous. I was looking for ideas other than formula, which tends to mess up his bowel program! Blessings!

[sharonca]

I have a pharmacy that calls to see if I need more formula and it is delivered. My dr and nutritionist set it up and Medicare pays. I buy Ensure to have something sweet to drink since I still can.

[pamnandy]

Barry, I might have missed it, but could you share your mornings smoothie recipe? We are just now getting into the tube feedings full time. Andy has fought it, and I read to him your other post about not fighting the tube. Just this morning he aspirated the chili he was attempting to eat and is paying a big price. I'm in contact with our nutritionist (awaiting for a return phone call as I am typing). Thank you!

[BethU]

That's a great tip on the Benecalorie. I'm definitely going to try it. I also order Resource 2.0 from Nestle online, and shipping is free. It's expensive, but I get a $40 discount if I repeat order automatically, so I am having them send an order to me regularly every two weeks.

I have had really scary choking episodes recently trying to eat a treat by mouth. Thank heavens for the tube! Also, I aspirate the tube feedings unless I sit quietly upright for 15-20 minutes, and have once or twice started to regurgitate a tube feeding through my mouth when I bent over for something too soon after a feeding! I'm also taking only a half serving at a time ... I add a lot of water to Resource., and it helps not to overload my poor stomach, which doesn't know what the heck is going on.

Despite slugging down the calories, I'm still losing weight too ... 3 more pounds in June. I'm going to try to take in 3,000 calories a day. I understand that ALS messes with your metabolism, and also I was doing a lot of "weight lifting" when my husband was falling a lot a couple weeks ago ... and had intense twitching all over for a few days after that. I am convinced that twitching burns calories!

[BarryG]

Hi Pam.

Here is my morning smoothie recipe, I can manage to swallow this at least as it is nice and thick.

1 Banana
1 package of powdered Carnation Instant breakfast (chocolate, strawberry or vanilla)
1/4 to 1/3 cup of whipping cream
2/3 to 3/4 cup of milk (I use 1% but 2% or homogenized works)
2 tablespoons of ground flax
2 tablespoons of wheat germ
1/2 cup of frozen fruit (strawberries, raspberries, blueberries, cranberries)

Put it all in a blender and puree it until all of the lumps are gone. Put it in a glass and drink it!

The banana is the thickener, the flax and wheat germ are for fibre, the whipping cream and milk are for the calories and the fruit is for taste and vitamins. I sometimes add a couple of tablespoons of creamy peanut butter for added protein (usually with the chocolate flavour instant breakfast). I drink one of these every morning, I don't know exactly how many calories it is but I think that it is probably 1000 so along with my three Resource 2.0 feeds and the small amount of other stuff that I can manage to eat I am getting 2500 to 3000 calories per day.

There are number of web sites that tells you how many calories a certain food has and I have used them to figure out how to get more calories and protein in. I have thought of adding some protein powder that body builders use but the packages are so huge and expensive I haven't bought any yet.

I hope that this helps Andy, I know that it is pretty much the only thing that I can swallow easily. Just make sure that the consistency is right, too thin or too thick and it will be difficult to swallow. It should flow easily but not be runny.

Barry :smile:

[GlenBrittle]

Question: do you normally taste what is put in the tube ?

I ask because there are certain foods that I hate because of the taste. Bananas are on top of that list.

[BarryG]

Glen, you don't taste anything that goes into the tube so put your bananas in them. Just make sure that you peel them first! But seriously, when I put a banana in my smoothie there is so much other taste that the banana is hardly noticeable and you probably could omit it and use some other thickening agent like a larger proportion of whipping cream. I don't put anything into my tube but formula but others on here are way more adventurous and inventive and do regular food. I don't see the point in putting anything that is purely for pleasure like beer in the tube because there is no taste.

[BethU]

Barry ... same here, with one exception. I love Coke and want the caffeine, so I have a can a day. I take a sip and spit it out while I'm tubing it for the "whole" Coke experience! And I can definitely feel the cold fizz in my stomach ... a different sensation than Ensure et al and very refreshing.

Also ... when tubing a drink of water, I can feel the coolness immediately at the base of my throat. I'm trying to train my brain to recognize that sensation as thirst being quenched.

Otherwise, I keep the process as simple and easy as possible with Resource and Ensure.

[pamnandy]

Thanks for the recipe, Barry! I didn't realize you were still swallowing. We had to draw a line in the sand, so to speak, with Andy. Have decided at the moment to totally tube feed, and to try the formula that the nutritionist wants him on. Hoping that this won't flair up any poop issues, which can be a whole different topic (when THOSE muscles go, YOU don't)!

[BarryG]

Hi Pam, yes I am still swallowing but just barely. I think that my line in the sand is coming very soon though as even my smoothie is starting to cause me problems. I don't want to think about going 100% tube feed though as I do love food even though I can't eat most things anymore. My peg and formula started out as a supplement to what I could eat but now it is becoming my main food. And I think that when the time comes I will just modify my smoothie so that it is more liquid and will go into my tube easily. I worry about not getting any fibre in my digestive system with only formula so my smoothie with flax and wheat germ will give me some and I might make add some bran too. I don't want any poop issues either! .:shock:

[joelc]

If you use a Vita-Mix you can blend up anything, even steak, and not have to worry about clogging your tube.

[lucysrealfood]

So glad to see you're all sharing your tube feeding recipe knowledge. We my husband and I started making homemade enteral nutrition we couldn't find any information online at all so I put together a website with the information we learned as we learned it. This information might be helpful to you as well. I have tube feeding recipes, basic equipment, basic techniques and some links to other helpful website. Also, we're always open to adding other people's ideas if you would like to contribute (we'll give you credit, of course!). Anyway, this is just a website we do to help (no ads or sponsorship).

Our website is lucysrealfood.com.

Best wishes,
Lucy

[indigosd]

Lucy,
WOW and THANK YOU!! I so appreciate that you have shared this incredible and FREE information :] I hope that your Husband is doing well.

[joelc]

Lucy, you site has been mentioned several times on this forum. I have promoted it many times, as a matter of fact your website was mentioned on the first page of this thread.

Great site! Thank you!

[lucysrealfood]

:razz: Great tips! I've got a website at lucysrealfood.com that has more tips and some actual feeding tube recipes with calorie count if anyone is interested in more specifics! Lucy

[joelc]

I have mentioned your website in the past, if it is a great site! Thank you!

I also have a link on my website. www.LifeWithALS.com