PrimaVera
New member
- Joined
- Apr 23, 2020
- Messages
- 9
- Reason
- PALS
- Diagnosis
- 03/2020
- Country
- US
- State
- CT
- City
- Shelton
I have severe bulbar onset ALS that seems to be rapidly progressing. Dx’d 3/2020 and arms/shoulders and legs very weak.
I have had a PEG tube since 10/2020. Using Kate Farms 1.4 or 1.0. Last several weeks have had severe acid reflux. Tried Prevacid 10 mg twice a day; no impact. Now using 30 mg twice a day, but only lasts a few hours, especially if I try to lie down. Even 60 mg before bed only lasts 4 hrs.
Dietician said to pump feed at 120 ml/hr vs bolus, but that takes the whole day and night to eat enough, and stomach never gets a rest.
Bowels also seem much slower. Given Senna, but that only produces diarrhea. Was trying TUDCA for a few weeks, but escalated acid reflux. Off it about 8 days, but still no relief.
Any suggestions would be welcomed! Not taking anything by mouth due to swallowing issues.
I have had a PEG tube since 10/2020. Using Kate Farms 1.4 or 1.0. Last several weeks have had severe acid reflux. Tried Prevacid 10 mg twice a day; no impact. Now using 30 mg twice a day, but only lasts a few hours, especially if I try to lie down. Even 60 mg before bed only lasts 4 hrs.
Dietician said to pump feed at 120 ml/hr vs bolus, but that takes the whole day and night to eat enough, and stomach never gets a rest.
Bowels also seem much slower. Given Senna, but that only produces diarrhea. Was trying TUDCA for a few weeks, but escalated acid reflux. Off it about 8 days, but still no relief.
Any suggestions would be welcomed! Not taking anything by mouth due to swallowing issues.