AA Diet Info for SMA

Based on Families Experience

Trevor’s Diet

Trevor, type 2, 18 months

Trevor was diagnosed in May 2011 at 10 1/2 months old and we started
the AA diet in late August of 2011. Right before we started the diet,
Trevor was at the doctors at least 3 times in one month with a
nasty cold we just could not get rid of or kept coming back. I waited
until he was better to start the diet in case he had any affects from
the diet. Since we have started the diet, Trevor has only been sick
one time and we were able to clear the sickness with only 2-3
breathing treatments. (keep in mind we live in New Orleans so one day
the temperature is 35 degrees then it will be 90 degrees the next
day!) I give full credit to the AA diet as to why Trevor has stayed
healthy so far and also maintaining and increasing in strength.

    Morning bottle:

  • 4 oz of almond milk (non sweetened)
  • 1 drop of vitamin D3 1000 IU
  • 1/4 tsp of creatine monohydrate
  • 4ml of Levocarnitine 100mg/ml
  • 1 mL of Liposomal Ubiquinol

Breakfast: usually one of the following; grits, banana, blueberry
waffle, oatmeal, pancake, nutri-grain bar……etc: (of course all
made with no eggs and almond milk, if needed)

    His daily juice contains:

  • 1 packet tolerex
  • 2 scoops NanoVM multi-vitamin 1-3 yr. olds
  • 1 packet of Omega 3 fish oil (Coromega orange flavor packets)
  • 1/8tsp 500 mg. L-glutamine powder
  • 1/8-1/4 teas. salt (sea salt)
  • 1 capsule of Vitamin C-500 with Rose Hips
  • 1/2 tsp of Magnesium Citrate
  • 1/4 tsp of Calcium Citrate
  • (all mixed in with 16 oz of liquid, 10 oz of water and the rest 100% juice)

Snacks include: applesauce, he loves his “puffs” –i get the garden
tomato and he loves them, cheerios, and fruit-banana and apples are
his 2 favorite–and watermelon!

Lunch/Dinner: one of the following
a potato (sweet or regular), rice with a little gravy, noodles with
red gravy, half slice of peanut butter with jelly, veggie pattie (we
make), sweet corn (one of his favorites), pizza with red sauce
only, etc…….. (all proportioned of course–he doesn’t eat a whole
pizza haha!)
—-if Trevor does not want or like what we gave him –he still likes
the stage 3 baby foods- most jars usually have 2-4 grams of protein

    Night time bottle:

  • 4 oz of almond milk (non sweetened)
  • 1/8 tsp Acidophilus Plus FOS Powder Probiotic (Milk free probiotic)
  • 1/4 tsp of creatine monohydrate
  • 4ml of Levocarnitine 100mg/ml
  • .5 mL of Liposomal Ubiquinol
  • 1/4 tsp cornstarch
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.