Monday, January 5, 2015

What's In a Name? - Liquid Hope


After ten months of being on a feeding tube and taking in the prescribed corn syrup based, semi-synthetic formula, we finally received approval from my Medicare Advantage provider to switch to Liquid Hope. According to its manufacturer, Functional Formularies Liquid Hope is: "... is a FDA Approved nutritionally complete, organic, real food, whole foods enteral formula and oral meal replacement."

While there's some obvious irony with the name, for Linda and me finding Liquid Hope was more than just a blessing for us. Finding Liquid Hope was finding another group of dedicated, passionate people who know the status quo for ALS families and so many others cannot stand. 

That's why we are ecstatic to announce that we are adding Functional Formularies/Liquid Hope to our fine group of Innovators. 

For us, it's not what's in Liquid Hope, like organic chick peas, garbanzo beans, turmeric, sweet potato, garlic, kale, peas, carrots and broccoli and other good-for-you, yummy stuff all mixed with
dose of love and compassion. It's what's missing. Things like: MALTODEXTRIN, HIGH FRUCTOSE CORN SYRUP, SUGAR, CALCIUM CASEINATE, SOYBEAN OIL, POTASSIUM CITRATE, SOY FIBER, PARTIALLY HYDROLYZED GUAR GUM, MAGNESIUM CHLORIDE, CALCIUM PHOSPHATE, HYDROXYLATED SOY LECITHIN, SODIUM ASCORBATE, CHOLINE CHLORIDE, SALT, SODIUM CITRATE AND MAGNESIUM PHOSPHATE. Liquid Hope is also soy, gluten, dairy and corn free. It has no Genetically Modified Organisms (GMO's) AND it comes in BPA free packaging!

Robin Gentry McGee, the founder and CEO of Functional Formularies, asked a question we should ask when it comes to our healthcare: Is there a better way? Medical practitioners and hospital Nutritionists and Dietitians need to re-examine (and maybe do some soul searching) on the issue of which enteral formulas they prescribe for their patients. Is a "semi-synthetic" formula, loaded with cheap carbs, sugars, artificial vitamins and preservatives good for anybody? Before Liquid Hope, there were literally no alternative. Now there is one, and it's Medicare approved, so there's no excuse.

Yup. As word spreads about Liquid Hope, the status quo is being shaken. There's a paradigm shift in how patients and their families are thinking about what is going in the tube. Patients with cancer, ALS, neonatal and pediatric patients and otherwise immune compromised patients need real food to fight their battles. No more should any patient accept the term "maintenance" regarding their care. Every person fighting an affliction deserves the chance to thrive. That's the theory behind the ALS/MS Residence we intend to build in Maine. That's the hope offered by our latest Innovator, Functional Formularies.



1 comment:

  1. Before John was on Liquid Hope , I was basically pouring corn syrup , soy oil and a synthetic mixture down his tube 3x a day. The results he would spit up/ vomit anywheres from 3-6x a feeding , become groggy due to his body trying to process the large amount of corn syrup. Our days were spent, doing a feeding dealing with the effects , cleaning him up from the reaction ( I would change his shirts 3-6x a day , him sleeping after the feedings , waking him up and doing it all over again. 3x a day this went on. He wasn't thriving he was barely surviving and always in danger of aspiration pneumonia , which can be deadly for ALS patients. He had aspiration pneumonia very early on and it was quite scary. This became a very slippery slope over the 10 months he took the Nestles formula. We fought hard for the new formula, it wasn't easy , but I knew he needed "real food" John never drank corn syrup 3x a day before his feeding tube why should he after his feeding tube. We won approval for LH and saw a change in him immediately. No more spitting up/ vomiting, no more GI issues , no more grogginess . He was staying awake through his feedings keeping them down, getting stronger , his gross motor skills were more crisp and motions were faster. I was beginning to think it was just hopeful thinking until the nurse said ,"no I see it too, he's improved"! Prior to the change the lower quadrant of his lung was not moving air.....6 weeks on LH and he has breath sounds in the lower quadrant of his lungs . The nurse listened on day a couple weeks ago and said , this hardly ever reverses in an ALS patient but I ear breath noise where I didn't before! All we could do was laugh and rejoice. He is no longer is just surviving and feeling terrible , he is thriving and productive and so much better feeling!! Now we know why Robin picked the name Liquid Hope :)

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