Timing of feeding tube?

[lgelb]

Tillie, PEGs are more often done with continuous BiPAP now as well, and the published results have shown that is often a viable alternative if the RIG won't work. If the hospital didn't offer that, I would suggest they ask about it.

 

[affected]

I doubt they do that here Laurie, most hospitals still won't consider a RIG

 

[eunyoung2000]

Hello,

My mom was diagnosed with bulbar ALS about a year ago. We as a family delayed getting peg tube because she was able to tolerate oral food although she did choke on liquid. She decided to get peg tube and received the surgery today because she lost and is losing too much weight too fast, dropped more than 10% of her weight in the past several months, from close to 100 lbs to now less than 80 lbs. She is having alot of pain and plus extreme emotional trauma. I would like to get some feedback from patient who received peg tube, if they think they made a right decision to get it. What are some of the pros and cons of having a peg tube? How long does it take for pain to subside? Or does pain linger at the peg tube site? Any feedback from current ALS patients with peg tube and family members' experience would be highly appreciated. It is emotionally draining to watch your loved one wither away from losing her speech, to ability to eat and now literally physical body reduced to bones.

 

[Nikki J]

My sister and other PALS have found the pain lasts about a week. my sister’s experience was also that providers told her it shouldn’t hurt as much as she said. But after the pain went away. She never regretted getting the tube. She wished she had done it sooner. She was also very emaciated. The feeding tube made all our lives better. She got nutrition and gained weight back. She didn’t choke anymore which was horrible for all of us and no one had to spend 45 minutes trying to feed each meal

she MAY have some feeding issues My sister did. She couldn’t tolerate jevity ( often the first thing given and lots of PAls end up changing for it). We ended up with a special formula the name I cannot remember that was easily digested. We also started with very slow infusions with the pump over 18 hours and gradually increased speed and amount. She eventually choose intermittent infusions during the day and would ask for them. They took a couple of hours but were easy to start and finish and while they were happening she could do whatever while sitting in her chair. if she has feeding issues look at her formula and also how she is getting it. Bolus feed didn’t work for my sister because it was too much too fast for her

 

[lisa g]

I had my peg placed in April. Honestly my pain was pretty uncomfortable for 2-3 days. I found sleeping in my lift chair really helped. Once the initial pain subsides you'll be surprised how easy and convenient the peg will be. I use Kate Farm's nutrition. With that formula though I tolerate it well I gained 14 pounds and had to adjust the amount of 4 cartons to 3 a day. Your physician will dictate how much nutrition will be needed daily. Even though I have a peg I can still enjoy a meal by mouth if its soft and I eat slowly and carefully.

I hope your mom's pain subsides soon.

 

[affected]

The pain typically lasts around 3 days, but my husband had a lot of pain for around 5 days but it then eased off over the next couple.
The sooner it is done the better, so if your mum has been losing a lot of weight she may find it takes her some time to readjust and you need to be patient. You should be able to get her well hydrated fairly quickly however. Remember they have punched a hole through her stomach, so allow her heal over this week and let all of you adjust.
I feel that in a months time you will all be very pleased at how easy it is to maintain and not worry about aspiration all the time.

oh, and Welcome!