AA Diet Info for SMA

Based on Families Experience

Sophia’s Diet

Sophia’s diet, type 1, age 7

Sophia was on  lactose-free infant formula right after her g-tube was placed until about 10-11 months.  She had MAJOR issues with bloating and tummy upset. We switched to Tolerex and white grape juice after that and never looked back. We slowly added Schiff multivitamin, V8 juice, baby food (applesauce and bananas), calcium, vitamin D, primadophilus (probiotic) and safflower oil. Sophia did okay, but still had some bloating and low potassium and high glucose levels. Eventually, we switched to:

  • 1 1/2 packets of Tolerex
  • 4 oz pear juice
  • 4 oz white grape juice
  • 16 oz donor breast milk
  • 1 tsp primadophilus (probiotic)
  • 500 mg vitamin C
  • 1mL Carnitor
  • 250 mg calcium citrate
  • 1200IU Vit D3
  • 1 scoop Nano VM multivitamin 4-8 yrs
  • 1 tsp of complete amino acid mix
  • 3 1/2 oz (1 pack) of organic sweet potatoes (gerber baby food)
  • 3 1/2 oz of organic applesauce
  • 3 1/2 oz of organic bananas
  • 1 tsp. safflower oil

We mix all ingredients in a blender every morning except the breast milk then once blended add the breast milk and shake up. She get 4 bolus feeds of 5 oz. at: 8 am, 11:30am, 3:30pm, 7 pm.  She gets her bolus feed over about 30 minutes. Then she gets 400 cc continuously overnight at 40cc/hour for 10 hours (9 pm to 7 am).  She gets 60 cc of water before and after each feed to flush everything through.

She gets water and juice at 10 am and 2 pm: we give her 30cc of water and 30-60 cc of fresh-squeezed organic orange juice twice daily. This has an alkalizing effect and aids digestion. She has done exceptionally well on this regimen! We have tried many different types of fats including flax, borage seed oil, fish oil with NO tolerance, rashes and bloating. This is what she seems to tolerate for now.

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.