Amino Acid Diet

What is The AMINO ACID DIET?

By: Mary Bodzo

This information is based on opinions and experiences compiled from parents of children with SMA and should not necessarily be relied upon as an alternative to medical advice from professional health care providers.

ABOUT THE DIET

The Amino Acid Diet is a nutritional approach that many SMA families believe has had a positive impact on their child’s quality of life. Using this dietary approach, milk and soy based formulas are eliminated and substituted with a low-fat, elemental free form amino acid formula. Elemental formulas are made from nutrients in their most broken down form, which require very little digestion.

The link above will take you directly to a website full of useful information about the Amino Acid Diet many SMA families use. Some physicians believe in it because so many families have sworn by it for many years and seen such positive results. Other physicians may not due to a lack of studies "proving" it scientifically. Either way, its a personal choice for your family, again with all the other choices you are forced to make with an SMA Diagnosis. I personally, as Carter's mother, did my research on the diet, spoke to many families who have used it for years. I then worked with two other wonderful SMA moms and a nutritionist to perfect "Carter's Diet" which I will post a sample of. If you are considering the diet, please do your research and understand the benefits of it. Carter, with many others, has regained much arm, foot, and head movement! He also has less sweating, and more energy.

Carter's Diet Before Age 1
45 teaspoons Neocate Infant Formula
14 oz Water
14 oz Pedialyte
4 oz White Grape Juice
1 (2.5 oz) jar, Baby Food, veggie
1 (2.5 oz) jar, Baby Food, fruit
5 mL "Animal Parade" Liquid Multivitamin
1.11 mL Calcium Powder
1 capsule Superfruit Oils
1 capsule Florajen3 Probiotic
1/2 capsule (250mg) Methionine
1/2 capsule (250mg) Glutamine
7.5 mL Carnitine
1 capsule (50mg) Ubiquinol
1/2 capsule (150mg) Choline

This makes 24 hours worth of food. 
Averaging 1130 mL of food.
Carter does 4 bolus feeds during daytime: each bolus is 147 mL over 1 hour (9am, noon, 3pm, 6pm)
At Night he does continuous feeds at 50 mL/hour
 (goal is 55 mL/hour)
for 10 hours (9pm-7am)



Carter's Current Diet (Started at Age 1)

2 Packets of Pediatric Vivonex
14 oz Water
14 oz Pedialyte
4 oz White Grape Juice
1 (2.5 oz) jar, Baby Food, veggie
1 (2.5 oz) jar, Baby Food, fruit
5 mL "Animal Parade" Liquid Multivitamin
1 .11 mL Calcium Powder
1 capsule Superfruit Oils
1 capsule Florajen3 Probiotic
1/2 capsule (250mg) Methionine
1/2 capsule (250mg) Glutamine
7.5 mL Carnitine
1 capsule (50mg) Ubiquinol
1/2 capsule (150mg) Choline

This makes 24 hours worth of food. 
Averaging 1130 mL of food.
Carter does 4 bolus feeds during daytime: each bolus is 147 mL over 1 hour (9am, noon, 3pm, 6pm)
At Night he does continuous feeds at 50 mL/hour
for 10 hours (9pm-7am)

Usually, you should be able to get your doctor to write you an order for the "Nutricia Essential Amino Mix," and/or the formulas, "Neocate", "Tolerex" or "Vivonex." As they are very expensive, and usually covered by insurances & brought to you by your DME company or whomever provides you with your nutrition needs. The rest, you will most likely need to purchase on your own.

You can buy some of the
ingredients at these links:

Supplements

Formulas

Blending your own fresh foods:

Many families have invested in a very good blender to make fresh fruits and veggies for their SMA child's diet. Most have recommended the Vitamix Blender. I prefer this route also than to purchase baby food for years and years, it gets expensive, and I try to prevent preservatives.
Here is a link to their website:
You can purchase it outright at a Bed Bath & Beyond store (cannot utilize any BB&B coupon on vitamix blenders) or also a good website is www.discountjuicers.com

This is a response email from Vitamix when I contact them. This is the process to get a reconditioned Vitamix at a 25% discount.

From a Vitamix Rep:
     Vitamix offers to customers with Medical needs a dispensation amounting to 25% off the price of a Vitamix 5200 Factory Recondition Model (*). To qualify for this dispensation, the customer needs to show proof of a medical condition where a G-Tube is required or where the patient can only be fed via a liquid diet. To that end, the customer needs to contact the physician for him/her to fax on his/her letterhead a note explaining the patient’s condition and how the Vitamix Blender would be helpful in the preparation of foods for the patient.

(*) Reconditioned machines may have been used for live demonstrations or in a photo shoot. They may also be machines that have been returned within the 30-day trial period. In any case, a Reconditioned Vitamix machine has seen very limited use. Upon return to the factory, the motor base of each machine is cleaned, inspected and repackaged with a brand new container plus a bonus kit that includes Recipes for Better Living Cookbook, Getting Started Cookbook, Tamper, and Let's Get Started DVD. Reconditioned Vitamix Super 5200 packages also include an additional dry blade container and Whole Grains Cookbook. In addition, each reconditioned Vitamix carries the same 7-Year Performance Warranty and a 30-Day Trial Period Refund Guarantee offered with a brand new machine. (Please Note: Reconditioned units are in limited quantities.)


Jean-Pierre "J.P." Minard
Direct Household Sales Consultant
Vitamix Corporation

8615 Usher Rd
Cleveland, OH 44138-2199

Phone: +1 800 848 2649 ext 2303
UK: 0845 868 4566
IE: 0766 709 854
Fax:  +1 440 235 3726
Email:  [email protected]