severe reflux after PEG

[Ammi-11]

my beautiful darling mum 74 years old, Diagnosed initially with atypical Parkinson’s 2022, and then last year was diagnosed with PSP , has rapidly deteriorated in the last 6 months. She was hardly able to swallow a few spoons of semisolid mashed and mixer blended fluid and sips of water. She had pseudo obstruction last month ( is on pruease 2 mg daily with crafting 30 ml night - has been with decreasing benefit) and then aspirated though it was mild pneumonitis . Thank God for small mercies .she had a PEG insertion done 2 weeks ago and is on 3 hourly feeds .now she suffers from severe reflux post feed , though all feeding precautions are taken .She is on pantaprazole 40 mg twice a day, domperidone 10 mg thrice , with two antacids .harrowing experience, my poor mum is suffering a lot .please can someone throw some light on this or if any experience with this

Thank you .

May Almighty ease the suffering of all our near and dear ones

[SunriseLegend]

excuse me if I’m stating the obvious but is she sitting up or lying down when she feeds? My husband is fed in bed overnight sitting up at 45 degree angle

[ckb4]

hi.. I am sorry to hear this is what’s happening to your mom niw. My sister was diagnosed w/ OSP a year ago and has rapidly declined like your mom… I believe her symptoms were missed for years and she is in end stage PSP already.. the neurologist recommended a PEG feeding tube also…’in case she needs it soon’ due to feeding issues if coughing and fears of aspiration etc… the Dr. at the long term care facility has talked to me and my sister about ‘quality of life’ w/ feeding tube .. I’ a Licensed Clinical Worker and know what she is getting at… do have a feeding tube or not… she cautioned that people still can have aspiration problems w/ feeding tube… and what does SHE want?…. talk to your mom about the Peg tube and if she wants to keep it or not…. It’s not easy to let the body ( and God) ) determine its course when Peg tubes are offered …talk to your mom about living out her life without it .. or extending her life ( maybe!) with it.. and let her decide about her end life ‘quality’…. my sister at first wanted it and now ( she can no longer talk) shakes her head ‘no’, she doesn’t want it…. The doctor SHOULD have a conversation with Both of you about it….then pray, listen to your mom’s wishes…. love to you and your mom….