feeding

It has been such a busy time and I hadn't had a chance to post earlier. He was diagnosed 3/23/2017 and progressed rapidly. By May 2017 he was on AVAPS, July 25th he got a feeding tube and by December he had pneumonia and after being intubated for a couple of weeks went home on the Trilogy. He...

For the second time, I have received a drug sent in a capsule when I can only take drugs through the PEG. This one is for Neudexta. My husband called the mail order pharmacy and after 30 minutes on the phone he was told that Neudexta only comes in a capsule and that I should contact my doctor...

I lost my Dad, Jeff Long (who was active on this site), in October of 2015 to ALS. I am currently looking at the Infant Feeding Characteristics of Patients with ALS with the University of North Carolina at Chapel Hill. The information is listed on the National ALS Registry website...

I have looked into this study and had a fairly extensive discussion with the study coordinator at the San Francisco site. I am posting information about this study here in case anyone is interested. Enrollment is still open for this phase 3 study. The study is sponsored by Brainstorm Cell...

Hello, I’m new to this forum. My mother was diagnosed with ALS in June of 2017. However, we believe her symptoms began a year or more prior. As you all know, it was devastating. My father is her primary caregiver. The ALS Association assists us with a nurse aid for 10 hours per week. We...

My dad has his peg placed yesterday. He was already week and losing weight and choking so badly - for hours, every single day.... At first I was so happy and relieved.... No more choking, and hopefully he'll become stronger eventually. And it was a miracle he decided that peg was a way to...

My sister is having an issue with vomiting. I believe it begins with saliva pooling which caused coughing, then gagging which sometimes leads to vomiting (about 3 - 4 times a week). She is taking 2 cans of Jevity via feeding tube around 1 pm and then 1 or 2 cans in the evening around 6 pm. This...

Hey peeps, I need your collective wisdom. We are in the hospital, day 9 post trach/vent. They have had him on a constant trickle feed with the same formula he was tolerating at home (2 cal) , and his stomach and colon are filling with gas that won't move. His stomach gets so distended that he...

Hey all, Have only posted once or twice before. I'm the caregiver for my partner, Mike, who has been diagnosed since August 2011. He uses a power chair and a feeding tube (although he's fortunately still able to enjoy a beer every night), a sip and puff respirator as he needs, and we use a...

He wakes up in the middle of the night choking on saliva and nothing helps. I mean - the only thing he tries is cough it out, and of course this doesn't help. His doctor - an anestesiologist with no experience with bulbar ALS, doesn't have any advice. My dad suffers so much he now often says he...