AA Diet Info for SMA

Based on Families Experience

Haley’s Diet

Haley Hoover is 16 years old and was diagnosed at 4 1/2 months old as a Type 1. I started her on Tolerex when she was 8 months old. Her g-tube was placed when she was a year old. Her diet has been consistent over the years with a few things added along the way. Haley has done very well on this diet, has maintained her ability to sit upright and drive her power wheelchair, and only requires bipap during sleep and illness. We attribute much of her excellent health and stability in strength to this diet.

  • 2 packs Tolerex
  • baby food fruits- Bananas, Prunes, Apples, Pears and Peaches
  • Stage 2 8 oz prune juice
  • Stage 2 baby food vegetables- Squash, Sweet Potatoes, Green Beans, and Carrots
  • Safflower Oil- 3/4 tsp
  • 1/8 tsp unprocessed salt
  • Lite Salt-1/4 tsp (I use this for the 350 mg of potassium in it)
  • Nano VM 1 scoop 4-8 yrs.
  • 2 Cal-mag Citrate plus D3
  • 1 Potassium citrate-99mg
  • Vitamin C-1000 mg
  • 1/2 of a B-Complex 50
  • 2 Vitamin D3 softgels-2000 IU
  • 1 L-Arginine-500 mg
  • 1 Carnipure L-Carnitine 500 mg
  • 1 Ultra CoQ10 100 mg
  • 1 Branch Chain Amino Acid Capsule
  • 1 Evening Primrose Oil softgel 1300 mg
  • Essential Amino Complex 2 to 3 capsules
  • Probiotic Multi-Enzyme 1 tablet
  • 1 packet coromega fish oil (2000mg)
  • L-Glutamine 1 teaspoon 5 grams.

I mix 8 oz. of prune juice and 12 to 16 oz of water with 2 packets of tolerex, all of the vitamins, salt, and safflower oil in a blender with 1/2 of a jar of bananas. This is her formula mixture for the day. She gets four boluses each day. For breakfast I mix the other 1/2 jar of bananas and a jar of prunes with 6 oz of formula. Each feeding equals about 8 to 10 oz once the baby food and formula is mixed. She gets a 6 to 8 oz flush of water with each feeding. For her lunch and dinner I use 2 of the 4 vegetables and mix them with about 6 oz of formula. For her last feeding she gets either pears, peaches or applesauce mixed with her formula. Again…after each feeding she gets the water flush. Her feedings are usually over a 20 to 30 minute period. At night she gets what is left of her formula mixed with water and I fill the feeding bag to the top. She is dripped at a rate of 145 cc per hour. She averages about 800 cc per night. Some nights she may get all of it..about 1000 cc’s and some nights she gets more air in her tummy and will only get 650 cc’s. Each night is a little different depending on what time she goes to bed…but overall the average is probably 800. She doesn’t have constipation issues…only a few times over the years.

This website explains the accurate amino acid diet for spinal muscular atrophy patients. For over 17 years, this diet has been used successfully in many SMA patients.Those following this diet appropriately are typically healthier and stronger than others similarly affected by SMA. Because this diet hasn't been studied by medical professionals, it is often not properly prescribed. I believe this is a disservice to SMA families striving to access all available care options for their children. This website has been established with the hope that more families can understand how to safely and optimally use this diet. Any information contained here is based on the opinion and experience of many families.