My daughter is slowly dying

For whatever reason that your docs will not pass or place a feeding tube there is always Total Parenteral Nutrition (TPN) through an IV. Her docs cannot just let her die without any interventions! The recommendation to seek care at a large institution is a very good idea and better a teaching facility.

This is why it’s taken off market in USA and my friend already has heart issues but thanks anyway.

Reglan is powerful but tons of side effects that Domperidona don’t have it .

I have a very acute GI issue …pain, difficulty swallowing , losing weight last year. Went to several well respected institutions (PENN & JH) both amazing doctors. However the doctor who helped me was and has been Dr Harris Brody (Homeopathic) using naturalistic remedies. The cost can be overwhelming but he also discovered the underlying cause of my acute chronic gastritis. It is serious but manageable. Months after Dr Brody’s diagnosis/it was confirmed by a dedicated Immunologist. Through remedies and life style changes( avoiding many foods, exercising to reduce stress and becoming informed understanding my condition) my life is becoming enjoyable again. I will never be able to rid myself of this condition…Acute GERD & gastritis due to a highly sensitive Histamine Intolerance. I also have underlying Portal hypertension with esophageal varicies due to staph infection at birth. Wow! I have given you an earful. Please look into this form of medical treatment to compliment your traditional care. I know it will help your daughter. (BTW-Dr Brody practices in Hatboro PA & his son Dr Robert Brody Homeopathic is in Connecticut) Best to your daughter!!! Please let me know if you have any other concerns.

I have GP and take Ondansetron. Usually it works, but not always. I am careful about what I eat, low fiber and no raw fruit or vegetables. I got GP from damage to the Vagus nerve during Nissen Fundo surgery. The wrap has failed now and I have another hiatal hernia and Barrett’s esophagus so my diet is more limited. I have an appointment with a new GI doc at UF health in Jacksonville. I can’t go to Mayo because Medicare is my primary health insurance. I think the suggestion to go to a University teaching hospital is excellent. Also, I understand Cleveland Clinic has a GP clinic. Praying you find help for your daughter.

Wishes & prayers to you & your daughter
I know it seems hopeless at times.
Maybe Mayo can help you.
I tried but was denied. I hope your luck is better than mine🤞

Dr. Brody (Homeopathic Doctor) can treat gastroparisis & MS as well. Good Luck!

@goincrayz - It must be awful watching your daughter decline. I agree with everyone else here that something is wrong.
Does your daughter have access to patient portals at the doctors she has seen? This is how I try to keep track of results and treatment recommendations from different doctors. It’s hard to remember otherwise. If she has access, you can print out current recommendations and see if there is a solid plan to get her stronger. If not, request clinical notes from each visit. I always get that now.
It also helps when you see a doctor not totally familiar with the course of her illness. Most doctors don’t communicate.
Her current urgent problem is nutrition. If she cannot retain the food she is eating/ drinking, a feeding tube appears to be needed. If she can have one as described above that also allows her to eat would be good. I guess TPN could be given too.
I knew a young man with IBD and malnutrition that succeeded in gaining enough weight using all night feeding tube. This man, unfortunately, did not have appetite for food secondary to years of minimal eating. That’s why it’s important to try to eat something by mouth daily to keep that habit going.
Gather as much information you can from her doctors’ notes and make a list of things that are scheduled and planned. If not enough, apply to a major medical center.
I agree that a consultation at Mayo would be very helpful. Your daughter is lucky to have you at her side. Her husband must be busy taking care of their son.
I would definitely try to get a Mayo appointment as soon as possible. If she gets seen there and treatments and recommendations given, her local doctors could follow through on it.
Hang in there and give her hope!

I feel like this is very similar to a situation I went through. Message me and maybe I can help with a few idea

@goingcrazy ---
I had an illness that sounds extremely similar...and it was not gastroparesis.
I could not eat much of anything--some small amount of plain oatmeal, occasional broth, crackers and fluid nutrition (Boost). But whether it stayed down or not depended 100% on the day, the stomach, etc. So I was throwing up more days than I wasn't and it became easier to not even really try to eat. Sad, but it was true at the time. I was a big girl so just NOT EATING was very strange.
So, I could afford to lose weight thankfully, because between barely eating and vomiting quote often, I lost 125lbs. I went from doctor to doctor, to specialist to specialist.
My diagnosis was not gastroparesis, but instead an extremely rare condition (about 200-300 cases in the medical journals, EVER), and has been diagnosed primary in African American or Asian infant, boys. Not a 47-49 year old white woman! The disorder is called "Adult Idiopathic Hypertrophic Pyloric Stenosis" (AIHPS). Basically, the pyloris shrinks down so tiny that food can't pass through it. This leads to backing up becuase there is nowhere to go, and sudden vomiting 🤢
Yes, treatment CAN BE surgery, but I wanted to try slightly more conservative options first. So, we started with stomach specialists who tried an endoscopy with a 'balloon dilation' [stretching/expanding] of the pyloris. I needed to do this procedure several times, but each time it helped a bit until it shrank back down again. I work in the medical field so I asked around to nurses and doctors I had worked with in the past and I got an excellent recommendation of a specialist at Johns Hopkins University Hospital. He basically said we could do the same balloon stretching but 'far more aggressively', or I'd be up for a G-POEM or Gastric Bypass.
Again, I wanted to try the least invasive, least life altering thing first, so I went with the 'aggressive stretching of the pyloris.' I was very nervous but also hopeful. And thankfully I was right to go that route. It worked!! I can eat again! I gained some weight back, which was good because I was dangerously thin and my closest family/friends were scared because they said I looked "gaunt and sick." So gaining 40lbs back sounds like a lot, but I'm extremely tall and it really just filled out the gaunt look.
There are absolutely still foods that I can't eat...really spicy foods, hard or slow to digest things like peppers/some greens for example. Just random things I've tried that can take days to process... but I'm not projectile vomiting anymore--just burping that vegetable flavor for days! So I've learned those few items to either skip completely, or chew for minutes to ensure digestion can occur.

If you can, message me privately. I'd be happy to talk to you and/or your daughter. There is hope, so hang in there. And if you haven't tried nutritional drinks like max-protein Boost, try that...just start out with a sip every now and then. At least get some calories, protein and other nutrients into the body, even if it takes hours to drink one. I hit the point of drinking 2 per day and some form of dinner, no matter how simple. Over time it continued to improve