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Hi Everyone. My dad was diagnosed with bulbar onset ALS in spring 2006. My folks got the call last night regarding getting a feeding tube put in next week. What have your experiences been? What should we be considering? Any information would be helpful. Thanks
 

Jane

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feed tube

Hello Daughter, I am sorry you find yourself in need of this site.
The feeding tube will make things easier for your Dad, Sis had one for about 16 months before her death. The procedure to have the tube inserted was literally only about 10 minutes long. We left the hospital about 30 minutes after she came back to the room. She was given something to relax her and then the procedure was done by spraying her throat and local anethesthic for exit area on stomach. She had about a week of discomfort, controled by pain med and also needed antibiotic for about 10 days.
Cleaning the area around the tube was scary at first but really not a problem, we did it once every day.
Initially she used it for meds, and then as she lost ability she used it for nutruition as well. We used several different types of supplements, ensure and finally one called peptomin. It was higher in calories and we were able to maintain her weight until the end of her life.
We used 2 ounce catheter tip syringes for feeding and had very little trouble with the tube blocking up. When it did we just pulled back on the syringe and that worked to pull out the blockage. We were very careful about flushing the tube before and after feeding with water. Not only because it helps keep tube running freely but also gave us a great opportunity to get more fluids into Sis.
Hope this is of some help to you
Jane
 

jo aust

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peg feeding

My mother has had peg feeding for about three months now. She is now on a high energy formula. She says she now has lots more energy. She doesn't stress over trying to eat now because she has all the nutients she requires. When she comes to stay with me for visits, I set up her feeds for her in a comfy chair in front of the tv and give her some ice cubes to suck on .[Its hot where we live.] She goes swimming with us. [She had to wait two weeks first] She is putting on weight and is much happier.

I think you should get the tube feeding set up before you need it so as not to loose to much weight.
 
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Thanks

Thanks so much. It is scary going into this. When the surgeon phoned my mom last night, my mom didn't really know what to ask. Thanks for the info re: the proceedure. Does anyone use anything other that the ensure and high cal supplements in their tube?
 

helper

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feeding tube was a great idea for my mother in law who could no longer swallow (bulbar onset) when she went in the hospital for the feeding tube she still hadn't been diagnosed with als..she had lost a tremendous amount of weight at this point. She was drinking ensure but that wasn't enough to get her weight up. Once she got the peg in she gained weight and strength..the hard part was the diagnosed of als. When she moved in with us we were going to have her in the pool with us but she didn't have the strength by then otherwise it would have been fine. At the end she was taking all her meds and nutrition through the feeding tube along with water and tonic water to help with her spasms. We never had a problem with her site at all, we were careful and kept it clean. It was interesting to see the nurses when she was in the hospital how they gave meds and her feed...they sure weren't careful like we were. We would always clean the syringes, use bottled water..them they used the same syringe for everything and just left it on the counter..yuck!
anyways, hope this helped a bit..

Jodie
 
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Update...it came quicker than we expected!

Due to a major storm in our area of the country, there have been many cancelled surgeries. My dad got a call on Thursday (one hour notice) to get the j-pegg. I guess the good thing was we didn't have time to stress about the procedure. There were some preliminary complications although minor on the grand scale of things. My advise to family is ask lots of questions as to why the health people are doing certain procedures. Make sure there is a medical reason that specifically applies to your loved one and they aren't just doing something out of routine. My example is at one point they were looking at reinserting a nasogastric tube that had displaced, so my dad could have his evening med. The initial insertion was very traumatic (its very hard to insert a ng tube if you have swallowing impairment)so my mom, dad and I stood our ground and said we are refusing his evening med so he didn't have to get the NG reinserted. A caution to consider here would be if the medication was critical and a missed dose would have severe effects. Anyway, from time of admission to discharge it was less than 24 hours. My dad has said that he does not have any pain at all around the pegg site. Today (which is about 2 days post procedure he did have some bleeding around and through the tube but after an emergency room visit they told us this sometimes happens). Tonight he couldn't even drink his tea because he was so full (a complaint we haven't heard for months). My dad is still up and around(was still able to go dancing on New Years Eve). His major problems are with swallowing and speech (bulbar effects). Hopefully he will be able to regain a bit of his 60plus pounds he has lost in the last six months since diagnosis. Thanks to those that responded.
 

hboyajian

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I am so glad your dad is doing alright with the PEG tube, and that the surgery itself went well for him. Good for you for being alert and aware about his health needs and ready to stand up for him when necessary.
 

concerned daughter

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Hello,

Many thanks from a brand-new member to all who shared their positive experiences with PEG tubes. My Mom was recently diagnosed with progressive bulbar atrophy, and her doctors are recommending that a PEG be inserted before she loses any more weight. She is adamant that she does not want one, so we're going to wait a month to see if she can put on some weight by herself, and postpone the PEG surgery for a while (though I realize we can't put it off forever).

My questions are:

(1) Does anyone know of any positive PEG tube experiences from someone in their 80s? My Mom is 83 and frail (only partly because of the bulbar atrophy), so I'm concerned about complications for someone of her age.

(2) Does anyone have suggestions for how to manage the PEG tube with someone who is cognitively impaired? My Mom is struggling cognitively, although she still lives alone (at her own insistence, and none of her docs seem to feel her cognitive impairment is severe enough to warrant nursing care or facility living). I'm looking into home health aides who can administer the feedings (if and when the PEG is inserted), but there seem to be insurance/legal issues that prevent custodial care aides from being permitted to assist with feeding tubes, and I don't think we can afford skilled nursing care for the recommended six daily feedings (Mom is not technically homebound, so Medicare won't cover it). Does anyone have any suggestions for home health care that includes PEG tube feedings? Or are the feedings simple enough that a cognitively impaired person can handle them (which seems to be the doctor's view)?

Thanks in advance for any and all advice!
 
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We are still real new at this but...

My dad is 70, so somewhat younger than your mother. It is a week today since he got his tube and he is doing alright. In our case, my mom does the care and feeding through the PEG. My dad is fairly frail at this point also so I don't know if he could actually do the feedings by himself. We also waited to see how things were going and he maintained his own but not without a lot of struggling to eat and drink and in the end got the PEG anyway. For my dad, the determining factor was having a barium swallow where they watched on Xray to see how well (or not, as in my dad's case) he was swallowing. The barium swallow helped my dad and his care team determine that the risk of aspiration was increasing so recommended he get the PEG. I have read many times on this forum that if a person chooses to go the PEG route, getting it sooner than later is better. The outcome of any procedure is better the stronger and healthier the individual is. Unfortunately I can not comment on assistance within the home as I am writing from Canada. Good luck to you and your mother. My thoughts are with you as you and your family make this decision.
 

hboyajian

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To concerned daughter. My parents also dealt with the problem of who could help with the tube feeding. They had a home health care person coming in for 6 hours per day who could help with bathing and other aspects of personal care. She assisted my mother with preparing for the tube feeding (getting things sterilized and the water and Ensure warmed up), but she was not actually allowed to use the syringe to administer food through the tube. However, other family members were being trained to do the feedings so that my mom would be able to have time off when she needed it. The site where the PEG tube was inserted also needed to be cleaned and dressed once a day. That was not so often, so Mom had no problem with it.
I have a hard time saying this, because the procedure could go perfectly well for your mother, but my dad (84) was frail at the time of the surgery and it appeared to weaken him considerably. He died 19 days after the surgery. I know you asked for positive experiences with the PEG tube in older people, and I sincerely wish I could give you that. There was no problem with infection. The site was healing very well. He did begin to gain weight with the high calorie liquid food, and he was getting more fluids which helped him not become dehydrated. It is possible that the muscles related to his breathing were weakening anyway, not exacerbated by the surgery, it is impossible to know. Without the PEG tube maybe his passing would have been harder on him. Again, it is impossible to know. I do think it is worth asking her doctors about the effects of surgery on people in their 80s and to make sure they are taking all necessary precautions to monitor her health during and after. I hope all goes well.
 

Al

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Hi concerned daughter. I don't have a peg tube but have a friend that had one for a while due to cancer so have a little experience with them. Not knowing how impaired your mom is makes it difficult to advise on whether she could handle the feedings herself. It is a relatively simple thing to hang the container of Ensure or whatever but there are flushings and other things that have to be addressed such as a possible blockage. Things like cleaning and sterilizing could be done by the health care workers. You say the doctors think she can handle it but they probably see her for 15 minutes per visit. You are really the only one that knows how good or bad she is. Is there any way that you can get a home health person or someone through the doctors office to show you what is involved in preparing and administering a feeding so that you can better judge if she is able to do it. I think that would be the best way to go. Also having a tooth filled is an ordeal for someone in their 80's so a surgical procedure is not without risks. You have some difficult choices ahead. I wish you all the best. AL.
 
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DaleEarle

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new york
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new york
hi,

Most of the blogs which i read daily are no-follow and i just use them for getting useful information and industry news. Thanks agains!:lol:
 
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Al

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We don't allow advertising here. I really don't think a bunch of ALS patients are looking for new jobs and I resent you putting your link here.

AL.
 

rose

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Al, seriously, what is wrong with people! thanks for looking out for us, as always.
 

BethU

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Hi, concerned daughter ...

I'm 73 and not frail, so I think your mom might have more trouble than me. I manage to do the flushing part without help when necessary. The flushing is very easy ... it's only a question of pouring water in the tube. But one problem I have is that my fingers and thumbs, especially, are weak, and I struggle to undo the clamp with one hand while holding the tube filled with water up in the air with the other hand.

Also, they recommend taking the feedings lying down, and so you have to juggle a hand mirror to see what tape you're undoing ... the tapes holding the dressing in place, or the tapes holding the little tube itself.

If your mother is motivated and still has strength in her hands, she might be able to manage, but even the flushing involves several steps. I haven't tried a solo run with the Ensure because I'm a klutz.

I'm also in the process of looking for in-home care, and you're right ... people back off really fast when you mention feeding tube. There must be some kind of insurance issue. I don't see why a general home aide couldn't help with the feeding. Certainly anyone could ask a friend or relative to help out, so why not an aide?

Good luck in solving this. Having the tube in will really benefit your mother down the line, I'm sure.
 
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