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    • #28063
      DeAnn R
      Keymaster

      On my never ending quest to find a formula that agrees with me I’m finally giving Real Food Blends a try. My sample shipment just arrived. Usually I do gravity feeds. we’ll have to play around with the consistency as it’s too thick to go through the gravity bag without watering it down. How do those of you on it take it? While I’m giving it a try I’m looking for a supplier and to see if insurance will cover it. Any advice? My current supplier said the don’t carry it. I like the concept and know it works for some of you, so I’m hopeful it’ll be the ticket.

    • #28067
      Yvette Haas
      Participant

      So glad you are trying something that will probably be a lot better for you! I do half Real Food Blends and half Liquid Hope, and I’m much healthier than I was with formula.

      You have a few options for administering it:
      – If you want the most simple option, I’d suggest doing it with a big syringe. Since you are used to gravity feeds, I’m assuming you typically do your food during the day and have someone around to help you with it? Some of the flavors are much thicker than the others, so you will probably need different amounts of liquid mixed in with each. The Turkey, Salmon, and Chicken ones can go through rather easily, with little additional liquid, while the Egg, Beef, and Quinoa ones are really thick and need to be thinned a lot. If you are worried about adding too much liquid and ending up with a large volume, consider using oat milk as your liquid. It acts like water, but has calories and is a good boost if you want extra carbs (RFB is a little high on fat and low on carbs for a lot of people with SMA). Oh, and don’t bother with cheap syringes after they get a little sticky. I don’t use any of the ones my DME sends me each month, because they get sticky after a few days. I learned from all the tubie pros on FB to just get a Miracle O-Ring Syringe. They each last a few years if you put a little olive oil on them every few days.
      – If you feel like going through insurance and getting a pump (paperwork and appeals), then I would recommend the Infinity pumps over the Kangaroo pumps. Both will work, but Infintys are a bit less fussy with inconsistent textures. You’ll still have to add some liquid though, no matter what (especially to the thicker 3 flavors). I also suggest either straining it or throwing it in the blender if you never want to hear the pump alarm. This is not totally necessary with the thin flavors, but more so with the thick ones.

      I feel like I probably just made this sound way confusing than it actually is. Sorry about that. If you have any questions, just let me know.

      Oh! And we have another community member who does RFB via gravity bolus. I have never done that, so I don’t know how much liquid she adds to make it go down, but I will send her this thread so she can add her expertise.

    • #28068
      Yvette Haas
      Participant

      I forgot to mention… I switched DMEs in order to get my food, but I think you might be able to work with the people at RFB directly. I know you could a few years ago. Julie (the original owner) was extremely helpful and worked hard to either get more DMEs to carry it or send it directly for the company. I’m not sure if they are still doing that though.
      If you want to switch to a different DME, I can tell you that Coram carries RFB. I won’t say they are a great DME though. I’ve had better and I’ve had worse.

    • #28069
      Kelly Miller
      Participant

      Okay, I would be that other community member Yvette was referring too. I’ve been taking RFB now since around 2016 when my stomach just suddenly stopped tolerating the usually nutritionist recommended formula. Let me clarify. Most traditionally trained nutritionists don’t have a clue about the formula needs of someone with SMA. I started taking RFB a couple of years after getting my g-tube, and my stomach turned around from constant nausea and frequent vomiting to feeling normal again. The transition was super easy, and the results were almost instantaneous. I swear by them now, even searching for a DME after we moved to another state. I ended up with Coram as well, and I haven’t had any problems. I just thought about this: I wonder if this switch on your on part might help with your intestinal issues you’ve mentioned since starting Evrysdi. Could be just a coincidence of the drug appearing at the same time as the bathroom troubles. Perhaps it’s your stomach forming a mutiny against your formula!

      Yvette has told you a lot of info, so I’ll try not to repeat. I can’t really tell you how much liquid you’ll need to use b/c it depends on the method and which flavor you get. I usually get the salmon entree one and the turkey one. I use water regularly and almond milk occasionally to dilute them. B/c the food is real, the blending is done with foods that are different in viscosity and amounts, and humans are involved in the making, each and every pouch is different in thickness. That means the salmon meal (I’m saying meals b/c they come with the protein, grain, & veggie all pureed together) you open for lunch won’t be the same thickness as the turkey you open for dinner. In fact, even the turkey you open for tonight’s dinner won’t be the same thickness as the turkey you open tomorrow night. I use whatever works for the food in my syringe at the time, whatever works with each pouch.

      I do gravity bolus feedings b/c that’s what I’ve always used. I’ve found from my times in the hospital when I was forced to be on a pump that my body does better with the smaller bolus feedings and, although I think I’m fat, apparently my stomach is rather small, so bolus works best for me. I say all this to say RFB is used by all sorts of people with all sorts of equipment. My g-tube is a mic-key, my illustrious co-member has a different setup. I also split my feedings with Liquid Hope thanks to Yvette’s guidance, b/c I wanted some more vitamins and couldn’t stand adding to my ever increasing list of pills, but I didn’t start that until a couple of months ago. You’ve just gotta try all the options to see what’s best for you.

      I don’t know what’s made you decide to give RFB a chance, I just know I’m sold on them 100% and would never go back to formulas made by all those companies that pump us full of chemicals, unnatural preservatives, and ingredients we have no idea what they are in the name of making them “healthy.” I can attest to the fact that after switching to RFB, I felt, and still do, better than ever before. I think I gave you a pitch on RFB back in the day, but they weren’t for you at the time. I’m just happy for you to join our ranks! I hope you’ll be as sold on them as we are.

    • #28070
      DeAnn R
      Keymaster

      Thanks ladies!

      Kelly, we have talked about RFB before, and I’ve kept that bug in my ear. I’m hopeful it will help with my digestive issues. I’m fairly certain it’s a combination of the formula and Evrysdi. Now that I’ve given the dietitian’s recommendations a shot it’s time to go rogue.

      Yvette, I appreciate the recommendations. It’ll be interesting to give it a whirl and I’m glad I can bounce ideas back & forth. Where do you get Liquid Hope? I’ve never heard of it before. I’m tempted to try the syringe method, but concerned it would be too much too quick for my stomach. Currently I do the gravity over about an hour. I’ll keep that bug in my ear too though and may give it a try if my stomach handles RFB. Oh, and if I can find a supplier in Minnesota.

      • #28071
        Yvette Haas
        Participant

        I get Liquid Hope from Coram as well. When I first started getting it, Coram did not stock it at the “local” distribution building, but they had it at their national warehouse and sent it out from there. I would get all of my supplies like a day or two after ordering a shipment, and then the food would arrive a day later. I think they might have come to terms with the fact that I would be getting it every month, and maybe they got some more requests for it, because now I get it all on the same day.
        If you are worried about the speed of using a syringe, just start slow. I can get 100mLs in about 1 minute, but then I can’t have more for a long while. How much do you want to be able to do at once?

        • #28072
          DeAnn R
          Keymaster

          Thanks, I’ll probably dilute it with water for now and keep the Liquid Hope in the back of my mind. When you do the bolus with the syringe do you just dump it into the syringe, or do you suck it up and push it in with the plunger? New to this method, so clueless.

        • #28092
          Yvette Haas
          Participant

          I prefer using the plunger. More control over the flow, less chance of spilling or clogging.

    • #28091
      Kelly Miller
      Participant

      I just poor it in the syringe and it drains down. It’s just like your gravity only much faster. If you’re worried about speed, I would suggest doing it the way Yvette does with the syringe. She uses the plunger to push it in. That way you have total control over speed and amount. It’s also easier to keep from getting clogged. My syringe for bolus is only 60ml, so it’s that much going in at once. I don’t if I said this before, but I can’t deal with doing it over time, either on a pump or gravity. For some reason, it makes me feel very full, too full. I just do better either by bolus or pushing with the plunger. Liquid Hope, if you haven’t looked it up yet, is totally plant-based which can have some advantages if your stomach doesn’t like meat products. The opposite can be true too. It’s all in what you can tolerate.

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