Grace for Rett » Grace's Life with Rett Syndrome

Vegan formula recipe for tube feeds

CORRECTIONS :: in the video I said there is no calcium and actually each bottle has 75% daily recommended calcium.

UPDATES :: This thickened up too much in the fridge so the next morning, the pump wouldn’t handle it. We left it to get to room temp and tried again hours later and still too thick. So now we’ve cracked the case: leave out room temp and leave room for water. Thin down just before feeding and works fine in pump this way.

Ok guys. I’ve had a brain storm. Today I posted the first video about switching Grace to real food. I’ve been sad, frustrated, confused and depressed about this whole thing. Like it’s another mountain I don’t have the energy for. Feeling like we’ll never find a way to make it work with our busy lives. And tonight it hit me: why are we trying to switch Grace to 100% blended food i.e. liquidising a PB&J sandwich or feeding her a liquid version of everything we’re eating? How about just starting with making a replacement formula which we can get through her feeding pump and then start adding in more bulky foods here and there? Duh!

In the beginning of all this, the goal was to get away from pumping her with a litre per day of the ready-made formula which includes things like maltodextrin which is the SECOND INGREDIENT after water and high on the glycemic index which causes your blood sugar to spike unhealthily fast. But I guess I was thinking that the only alternative to the formula was to find a way to get cooked food into her until this brainstorm that actually, I could just replace the formula as a first step.

Recipe

  • 1 carton organic, unsweetened soy milk (I’d recommend almond or hemp but I had a bottle of soy in the fridge)
  • 100g peanut butter (4 tbsp)
  • 1 banana
  • 100g raw cashews

Cost (versus £9.78 per bottle of the pre made formula which is £586 per month if bought privately. The NHS pays £4.88)

  • Total cost = £4.44
  • Per 500ml bottle = £1.48
  • Per 250ml feed = 0.74 pence
  • Cost per month = £88

Enhancement ideas

  • Liquid vitamins
  • Fish oil
  • Vit C powder during cold season
  • Green/superfood powders

Nutritional Values per 500ml bottle.

The first number is my recipe and the second number is the pre-mixed formula. My recipe is higher fat because of the nuts but also higher protein. It’s higher sugar, but it’s lower glycemic index sugars and perhaps also the sugar in the peanut butter which is a more processed brand than I’d like to be using.

  • Calories 500/500
  • Fat 37g/19g
  • Saturated 6g/2g
  • Protein 24g/20g
  • Fibre 5g/0g
  • Sugar 9g/5g
  • Carbs 22g/61g
  • Calcium (my recipe delivers 75% of daily recommended calcium per bottle so grace gets 150%)

Pros/Cons

  • Needs to be made on a daily or bi-daily basis
  • You need a high powered blender (like a Vitamix) if you’re going to do the cashews and this is about £500 OR you can soak them overnight and use a regular blender.
  • Needs to be kept in the fridge but I imagine sending her bottle to school isn’t a huge deal cuz it’s just a few hours
  • Here in the UK, the feed is delivered free and this will cost £88 per month. BUT it’s only free to us. It costs the taxpayers about £3,500 per year to feed Grace and I don’t see why that’s necessary if we can do this.
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