PEG tube for respiratory onset

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Samkl

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Would anyone not recommend a PEG for a respiratory onset PALS? My brother was first diagnosed in August 2019, and seems to be progressing reasonably slowly from what j can gather. No one, neither his doctor nor his partner, has encouraged him to get a tube, even though weight loss and eating are a problem, and have been for quite a while. I quote from here frequently the benefits of a PEG, but I wondered if the respiratory onset, rather than any other sort might be the issue.
 

Nikki J

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If his breathing is very bad there might be concerns about the procedure although people with pretty low numbers have had rig procedures while using bipap and come through ok.

I can’t think of another reason. Weight is a huge issue as you know. Respiratory compromise can really up the caloric needs too as breathing uses so much energy. If your brother wants a tube he should ask asap. It would save energy as well as providing a safe route if his swallow is bad. Do you know for sure he hasn’t been offered
 

Samkl

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No, it hasn’t been offered. He believes there’s a sense of “what’s the point” because he is respiratory onset, and that’s the start of the end point in ALS. He’s 12 months in to a 2 year prognosis. He uses His BIPAP overnight, and Sometimes during the day for a rest. I’ve said for months and months he should get a feeding tube, but it hasn’t been raised by anybody in his team. He is a throat cancer survivor, and since his RX treatment eating and swallowing has always been mildly an issue. He did have a feeding tube years ago when he was having radiation for the throat cancer. Eating and trying to keep any weight on has been a real source of stress for at least 8 months, perhaps in part because of anxiety.
 

lgelb

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I'm with Nikki. A prognosis is a prediction, not a certainty. Even a year is a long time and of course nutrition is part of that prognosis. A feeding tube could make it much more worth living. If you were saying he wants to end his life now, of course, I would say, that is his wish, but if he is playing it out for now, our statement stands. I would present him with that fork in the road and see what his response is.

Best,
Laurie
 

KimT

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IMO, a feeding tube will increase his quality of life and make his ultimate transition more comfortable and manageable.
 
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