peg

  1. T

    Seeking input from PALS who have a button type PEG

    I had a dangler PEG inserted six months ago. It's pretty nasty now and I need to get it replaced soon. I'm considering changing to the button type. My questions are: What's on the inside that keeps it in place? If it's a balloon, what is the maintenance? Can it be pulled out a little to...
  2. H

    New to PEG - medications/ supplements questions

    Hi all - Hoping to gain some insight for my person living with ALS. Their tube will be placed very soon. Looking at this as a positive addition as swallowing is difficult, especially pills and liquids. Meeting with doctor soon about many of my below questions, but we are eager to have some...
  3. O

    Why am I so against a PEG?

    My health team has all said I need a PEG. My bulbar problems have led to paralyzed diaphragm so I'm trach'd and on a vent almost full time. I've lost a bunch of weight and that has slowed but I am still losing weight and can only manage one meal a day which takes over an hour. I finally...
  4. Colleen15

    Peg tube question

    I got tube a week ago. I like to drink iced coffee by mouth, but then I see coffee backing up in my tube. Any solutions to this? Thanks
  5. Tomswife

    Peg is a Good Thing

    After diagnosis, PALS often has to decide when and if to have a feeding tube placed. Tom had his PEG tube placed early (before needed) as advised by the clinic. We are both so very grateful he made this decision. Having a PEG makes the administration of medication very easy and efficient...
  6. Tomswife

    PEG ENDOSCOPY PROCEDURE NOTES

    I am attaching the notes from PALS Peg endoscopy. This way you can learn how it is done.
  7. M

    RIG vs. PEG

    I'm so confused. The clinic director's order just says, "feeding tube." I want RIG. For some reason, I've been told to drive 90 min each way, to get a CT scan. I'm concerned that this means I'm queued up for PEG. Also, I don't understand why, if I have to get CT, I can't get it locally and...
  8. M

    PEG procedure questions

    I called to schedule my PEG today. They said they want to do the CT themselves (90 min drive each way). Then they want to have me open my mouth and say Aahh so they can see how open my airway is (or isn't), and based on what they see they will score me (mallampati), and that plus my "history"...
  9. Tomswife

    Peg tube placement - inside out.

    Tom is scheduled for his PEG tube November 23. Because he has bulbar weakness he cannot recline more than 60 degrees. Therefore the typical way the tube is placed "outside in " will not be used. His procedure will be done at the Center for Digestive Disease. He will be placed under general...
  10. I

    Very Fast Progression

    I was originally diagnosed with progressive bulbar palsy in January of 2018. At that time we were told that there was an excellent possibility of having several years before things really became troublesome. In April 2018 I had a PEG put in and speaking was no longer a possibility. My legs...
    • Idaho2790
    • Thread
    • ability bulbar bulbar onset diagnosed foot life night onset pain pbp peg progression vision vomiting walker work
    • Replies: 0
    • Forum: People with ALS (PALS)
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