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Median Arcuate Ligament Syndrome (MALS)
Digestive Health | Last Active: 9 hours ago | Replies (1229)Comment receiving replies
@ukmalsman @kariulrich @astaingegerdm
Thank you everyone for chiming in, with your support and suggestions.
You are all correct. It should NOT have come to this. When he was hospitalized for malnutrition and anxiety attack a few months ago, he was admitted to the ER, but not provided with food or drink, or IV fluids, or ANYTHING, and eventually he discharged himself. I WISH that I had been there, I want to scream at so many people that keep giving him this endless run around.
I appreciate the hope and advice that you are giving, but our outlook is so very grim right now, it's hard to hold out hope.
I want to impress upon you the severity of the situation we are in, and how heartbreakingly late in the game I have entered the picture. Lou is very weak and in a downward spiral. He is 6'2" and weighs 102 lbs, and continues to lose weight. We do believe there is another underlying condition that has gone untreated - as even drinking water causes him pain - but he is too weak to leave his bed, let alone his house to undergo examination or any follow up procedures.
I am trying to figure out if it's even possible to get him admitted to a hospital with IV fluids and feeding tube. BUT if we try to do this, they will immediately pull him of off of hospice care and I will be very blunt that hospice is the only thing keeping him alive right now. So I need to be absolutely SURE of our plan before taking any action.
Right now he is on a diet of:
+ 2 cups of Resource 2.0 over the course of the day (1/4 cup every hour)
+ Breakfast: 2/3 serving of oat meal with honey, butter, and 8 blueberries
+ Dinner: Chicken stock, butter, a tbsp of finely shredded chicken, and either egg drop or gluten free pasta
This only totals about 1,600 cal a day, and he really needs to be getting closer to 2000 to regain any weight. I am scrambling to read up on nutrition for him, just to get him stabilized, and I am afraid that there are things that are hurting him in the above plan, but I can't be sure.
Hospice care became a necessity because he couldn't get the pain and anxiety meds through his doctors. He has NOT had a PCP following him through this process, he has had to piece meal every appointment together by himself himself, and the Albuquerque medical facilities are absolutely horrendous.
I am home in LA for 24 hours, and return to Lou's tomorrow morning. I will review this meal plan with him and have ordered Fresubin, but it ships from the UK and will not get here until after Christmas.
Thank you again
Replies to "@ukmalsman @kariulrich @astaingegerdm Thank you everyone for chiming in, with your support and suggestions. You are..."
Hi Rachel @racheldmark
Thanks for giving us clearer picture of his condition. Your uncle Lou is really in bad shape, I agree with @annief and yourself the hospice looks like it is keeping him alive, focusing on where he is is not important right now. The diet he is on maybe causing the pain, mainly the oatmeal and blueberries both are on the no list. Oats have soluble fiber in it that our small intestines find hard to digest we don't produce the enzyme to break it down. Oats are probably the worst thing on his menu, they made my life hell. It is because they stay in your system for a long time. People eat oats as they slowly release energy over the day and the fiber aids in digestion. You don't want to put anything in his digestive system that isn't easily digested.
For breakfast - white bread toasted with honey, pancakes or waffles made from refined white flour or yogurt without the fruit.
Dinner - pasta, noodles, mashed potato or soft white rice and I would mince the chicken, chicken stock.
dessert - custard, plain sponge pudding.
Right now you need to keep anything that is hard to digest out of his diet. I know the Resource 2.0 helps increase his calorie count but it contains fiber. Drastic steps need to be taken so I would change from Resource 2.0 to Resource Energy which contains no fiber but has less protein and calories.
Fresubin is great but make sure you order the fresubin Jucy, however if you change to Resource Energy which has no fiber you don't need the Fresubin.
When I did my research I came across this on the Mayo site
https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/low-fiber-diet/art-20048511
Although I can tolerate a little fiber in liquid form your uncle Lou needs to be on a zero fiber diet, anything hard to digest or non digestible needs to be off the menu. It is hard for us to get out of the habit of eating healthy, with MALs you really have to change your mindset, the primary goal is ease of digestion and not to aid digestion.
Remember anything white is alright.
If your uncle Lou is not on a high mineral and vitamin complex he will need to start taking them. They make a great deal of difference on how he will feel. I stopped taking mine for a week and I felt so lousy, brain fog increased and I was so lethargic I could barely move around.
Any questions feel free to ask.
Mark
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Your plan to keep him on hospice to try to get him stronger seems reasonable. People go on and off hospice often. It’s goal may be to help the dying but if you can get him the nutrition and support to get him stronger so you can get him treatment, then they will take him off once you seek treatment. Don’t feel bad about doing that. At this point it sounds like you don’t know exactly what is causing some of his symptoms. Yournot trying to deceive but your immediate goal is his care so hospice sounds reasonable until and if you know more and he can do more. Just saying use the resources you have available until you reach the next step.