Tube feeding, Ensure and reflux

[My Mom]

Hello everyone, I am new to the forum and am trying to help my mom with ALS. She is new to computers and I want to get her signed on to the forum in the near future. She is at the stage of switching to Ensure and tube feeding entirely. She has a big problem with acid reflux, especially from the Ensure. If anyone has any suggestions that may help, please let me know. I have to rush off to work, it took me too long to get signed in. I will check for any feedback tonight. Have a great day everyone.
Sincerely, Paul

 

[Patsy]

First get a dietitian to prescribe a high protein formula for the ALS. Next get your mother to the doctor's to have the esophageal gastric acid reflux assessed and will probably prescribe a medication for it.
Patsy

 

[My Mom]

Thank you Patsy

Thank you Patsy,
I appreciate the info, I will get on it, the dietitian told her today to take more Ensure, and she will get a feeding pump that will feed more slowly.
I think they prescribed Malox for the reflux. She has been working on the reflux problem for a while ; but it got worst when she started only taking the formula. I will look into a higher protein formula and more info on the reflux.
Thanks again for taking the time to respond.
Paul

 

[Patsy]

Paul;
I don't think that an antacid would be enough to control the acid. It is used for the short term. I had the same thing after the feeding tube, my acid reflux got worse. A "proton pump inhibitor " drug like Losec is what I use. Works for me.
Patsy

 

[My Mom]

Losec

Thank you again Patsy, I am trying to help my mom get signed on to the forum; but we are having difficulty, she should be on by Monday or Tuesday.

 

[july]

new to group

Hello Everyone. I'm new to this group and I have to say I'm very glad to have found it. My mom was diagnosed with ALS September 1/04. She's had a hard time swallowing, she was always choking beit on water or her own spit. It was getting worse & worse as time progressed. Dr's finally diagnosed her with ALS. The shocker was her ALS has started in her lungs and esophogus (SP?), that's usually the last place ALS settles doesn't it?
Well it's been 9 months now, this loving lively vibrant woman has lost so many abilities it's heart breaking... she can no longer talk, she grunts, she can no longer eat, they placed a feeding tube in her last week, and two days ago they just fit her with a breathing operatus for her at night to help her lungs function properly.
I'm at a loss, I don't know what to do, she's two provinces away in Quebec, i live in Manitoba. I'm her only daughter, the youngest of the family and the only one that lives out of province. I feel so guilty for not being there for her.
We are so close to each other, just before she was diagnosed we went on a cruise together just the two of us and has a wonderful time... I look back at that time and can't believe she's how she is today. Oh how I miss my mom.
Thank you for reading I just needed to vent I guess.
My dad is being very supportive, taking care of her 24/7. My brothers do what they can too but a mom & daughter link is just not the same.

 

[TBear]

Hi July in Manitoba:

Very sorry to hear about your mom. It sounds as if her support network is working well in Quebec, and it's good that your Dad and brothers are able to provide care for her.
My daughters weren't old enough to have the kind of relationship with their mom that you seem to have with yours... you are truly blessed... I guess it comes with age.
ALS seems to afflict different people at different rates and capacities. The debilitation sometimes even plateaus for a while. With luck your mom will stabilize and perhaps you can enjoy even more vacations with her.

Good luck. For the most part we are all here to help out if you have questions... or to provide ears if you just need to vent.

CHeers

T

 

[july]

Thank you very much for your kind words TBear. I'll keep my ears & eyes open for more I have a feeling I'll need help getting thru this. I'll also keep you guys up to date too.

J.

 

[Carol Deboer]

Hi guys and welcome July,

Henry was on Isosource via the feeding tube. It is full of calories and nutirents. Maybe you could look into that. Sorry to hear about your Mom. It is an awful thing to hear that someone you love has als. However, you will learn how to live and modify with each passing day. We did. It was a lot of work, but if you have a good support system in place you will make out fine. If you need anything at all please feel free to ask. If you need to vent, well then, vent. We will all listen. All of us here are in the same boat. Good luck to you and your family and we will keep you in our prayers.

Stay Strong. Carol

 

[me]

Welcome July - Feel free to vent as needed. Melissa

 

[Timshelper]

Hi as Carol said there are many nutritonal supplements out there and maybe ensure just isnt the one for her. You can kind of relate to babies when they first taking formula for some the first one they try works fine but for some it takes a lot of experimenting. Losec is a good drug for acid reflux but is usually given to people with GERD. Maybe she should try ranitidine 150 twice daily first and if that doesnt work then try the cadillacs of drugs like Losec or Prevacid. I hope this helps. If you need to vent this is definitly the place to do so. Welcome.
Kim
ALS About Loving Someone

 

[bakerlady]

Mom's reflux problem

Hi there... I am new to this board. I am an LPN in Alberta just to tell you a bit about myself. If your mom is not taking anything by mouth food or meds and everything is given through the PEG. Try and get a drug called losec MOPS. Losec generally is a medication that is sustained release and it can plug up PEG tubes (trust me i have had this problem before) Do not try Prevacid either it another cement. The MOPS can be added to water before administration into the PEG and it will work the same as Losec for the reflux. Thing is Losec MOPS are really hard to get. You might have to get real friendly with your local pharmacist and the can contact the manufacturer to get them for you. Now the last time I had given Losec MOPS was about 3 years ago. Please check and see if you can get this medication still cause I found it very handy with this situation.