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janandscott

New member
Joined
Jan 16, 2018
Messages
6
Reason
Loved one DX
Diagnosis
12/2015
Country
Uni
State
FL
City
Jacksonville
I'm Janet, my 30 yr old son was diagnosed with ALS in December 2015 and he has had a progressive decline since. He uses a trilogy 24/7, is currently on tube feed and he can still talk. Over Christmas holiday he was in the hospital for pneumonia, He is back home now but he is having really soft stools and alot of uncomfortable gas and bloating. we've tried Imodium but that hasn't helped. He's suppose to get 6 cartons of his nutriention but he's so uncomfortable we're lucky if we get 2 a day. Anyone out there have any suggestions on what we can do to make him more comfortable so he can get enough calories and help him get rid of the gas? Would appreciate any suggestions

Janet
 
Hi, Janet! So sorry for your struggles. I am responding from a somewhat uninformed point of view -- my husband has ALS, and is currently able to eat a regular diet with some modification. But as a a hospice nurse who has seen many people on tube feeds, and of course envisioning this possibility for our future, I began to wonder why everyone on tube feeds uses "formula" -- seemed to me like regular food, pureed and thinned, would have to be a better alternative from the point of view of digestive health. And I found quite a bit of info online -- some people do, indeed, make this choice. Here's website with some info:

Home Tube Feeding with Blenderized Foods - Oley Foundation

Disclaimer: I have no personal experience, but it seems like many have found this to be the answer to gas/bloating/diarrhea or whatever that was happening with a standard formula. The downside, I'd imagine, is that it is most certainly more work than using a can, and I DO know from personal experience that additional work is something that a person caring for someone with ALS does NOT need! :) Also, it seems there are "real" blenderized foods available for purchase, pre-prepared -- but I would imagine they are a lot more costly than the standard formulas. Anyway, just thought I'd offer this as an option for you to look into. And perhaps others on this forum have more experience to offer. Best of luck!
 
Hi Janet, so sorry to have to welcome you here, but it is a little slice of heaven on earth.

As to the tube feedings, if those are not working, ask for a change to something different. There are many types. My husband, Brian, started with Jevity, he swelled like a balloon, we then tried Osmolite which gave his poop a sandy consistancy. From there we used Glucerna. He’s currently doing very well on 2 Cal HN. Because it’s 2 calories per ml, he runs at 30 cc/hr 24/7. That makes the quantity small, but the calories where he needs them to be. It is 3 cans a day for him. Ask the nutritionist art his clinic if you go to one.

Something I did was look them up online, then I’d buy a case of something to try to see how he did. Then I asked for an order. Depends on how well you can work with his Dr. I figured that was easier than asking for a different order all the time. Just look at his current cans and see how many calories he’s getting a day and go from there. Most come in different strengths, so the higher the cal/cc the less they need to take in.

I hope that helps. No matter what you need to let the physician know that what he’s getting isn’t working.

Hugs,

Sue
 
Thanks, Sue. Good information. Before Scott got the pnumonia just before Christmas he was eating on his own so this tube feeding is something new for us to deal with. I will start looking this stuff up. He sees his Dr the end of next week but would like to make a change before then because he is so discomfortable right now
Thanks, Janet
 
Really sorry to welcome you here Janet.

Sue is spot on about trial and error to find the right formula for each person.

You can also blend real food and put it through, and there are lots of different formula types and calorie/fibre percentages.

We never found one that really sat well with my Chris because he wouldn't really cooperate in the whole effort and it's awful watching them waste away.
 
Very sorry to hear about your son, Janet. He is lucky to have you. We will help however we can.

Liquid Hope and Kate's Farm are two alternative formulas that some here have had success with. Many commercial formulas are high in corn syrup, not very healthy for anyone. And until his GI tract has stabilized, you might avoid dairy/whey.

If you search these forums (button at the top of the page), you can find recipes for using real food, but generally most foods can be blenderized in a high-power machine with enough liquid.

Best,
Laurie
 
Janet, i did leave out, not sure why, that for a while I did blendarize my own food for Brian as well. I quit because he was struggling with volume and when doing your own you have to take care to get in enough calories, and then need to get it thin enough to go through the tube. It’s hard to use a pump with homemade food as well. A lot is determined by how he tolerates the feedings. If he’s struggling, don’t wait, call the Dr today. Liquid Hope tends to be quite costly and hard to get approved by insurance. You have to try and prove several of the standard formulas don’t work first.

Hugs,

Sue
 
Another thought is that the recent antibiotics for pneumonia may have messed up his gut. This is usually temporary, but sometimes administration of acidophilus or other probiotics can help.
 
good point Karen I often popped probiotics in the tube :)
 
Thanks everyone for the feedback. His doctor is changing the formula, so hopefully we find one that works, if not we may need to try blending. He is getting probiotics thru yogurt. I started looking formulas up on line like you suggested, Sue ,but was really confusing. Guess I need to do some more research

Janet
 
Janet i purchased a book thru Amazon. Tube Feeding Formulas i think it was something like that. It has recipes and lots of info.

Hugs,

Sue
 
there is also a great facebook group for people with feeding tubes, I forget the name of it as I'm no longer a member - can someone else chime in with that?
 
If he was on antibiotics AND in the hospital, I would ask the doctor about a stool test for C. Diff. It’s not something I ever would’ve given a second thought about, but I had it a little over a year ago. I had it for a month before the doctors finally figured out what was wrong with me.
 
Hi Janet,
I too am sorry to welcome you here but glad you found this forum. These folks have been so helpful. I hope you find something that works well for your son. Please keep us posted.
Love,
Megan
 
Janet are you having any success?
 
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