mia
New member
- Joined
- Aug 2, 2024
- Messages
- 3
- Reason
- Lost a loved one
- Diagnosis
- 03/2022
- Country
- US
- State
- CA
- City
- Sunnyvale
Hi, I just lost my husband.
He had an accident in March 2022. 3 days after he was diagnosed with ALS. After the hospital, he was sent to an SNF for rehab, since he suddenly could not swallow he got a feeding tube.
Ironically, as soon as they found out, he was diagnosed with ALS they stopped treating him, because there is no restorative goal. But since ALS is a hypermetabolic disease, he should have gotten more calories than normal. Instead, he became malnourished. Within weeks, he lost weight and especially muscle mass. He got some weight back, but never muscle mass. I fought hard, I was told I could not take him home. It was not allowed, because we live on the 3rd floor. All lies. After he aspirated there and needed an emergency trach. I never sent him back and took him home.
He got the regular formulas, the last was 2CalHN. But in retrospect, if people had told me I could, I would have fed him more with blenderized food. I found that out by accident. Formula shipment was late. I had nothing to feed him, so I gave him Greek joghurt, rice with carrots and scrambled eggs. Positive side effect, no more laxatives necessary.
But unfortunately, so many doctors have no idea that you can give through a feeding tube, whatever goes through, mostly not by gravity but via syringe and many dietitians are focused on formulas only.
So please be careful, your loved one needs more calories from protein and fat for the long run . Many vitamins and minerals are better absorbed from real food than from pills. A BMI should be higher than that of a healthy person.
He had an accident in March 2022. 3 days after he was diagnosed with ALS. After the hospital, he was sent to an SNF for rehab, since he suddenly could not swallow he got a feeding tube.
Ironically, as soon as they found out, he was diagnosed with ALS they stopped treating him, because there is no restorative goal. But since ALS is a hypermetabolic disease, he should have gotten more calories than normal. Instead, he became malnourished. Within weeks, he lost weight and especially muscle mass. He got some weight back, but never muscle mass. I fought hard, I was told I could not take him home. It was not allowed, because we live on the 3rd floor. All lies. After he aspirated there and needed an emergency trach. I never sent him back and took him home.
He got the regular formulas, the last was 2CalHN. But in retrospect, if people had told me I could, I would have fed him more with blenderized food. I found that out by accident. Formula shipment was late. I had nothing to feed him, so I gave him Greek joghurt, rice with carrots and scrambled eggs. Positive side effect, no more laxatives necessary.
But unfortunately, so many doctors have no idea that you can give through a feeding tube, whatever goes through, mostly not by gravity but via syringe and many dietitians are focused on formulas only.
So please be careful, your loved one needs more calories from protein and fat for the long run . Many vitamins and minerals are better absorbed from real food than from pills. A BMI should be higher than that of a healthy person.
Last edited by a moderator:
