AA Diet Info for SMA

Based on Families Experience

Ella’s Diet

Ella’s diet, type 2, age 2

Ella has always been a very happy and spirited little girl but at
around 7-8 months we started to notice that she wasn’t progressing as
fast as her older brother had. We initially thought she was just a
late bloomer but realized that it had to be more when hypotonia began.
We started PT with minimal gains but received an official diagnosis of
SMA just after her first birthday. Ella got weaker over the months and
even more so with her first illness at 16 months. She lost 1.5 lbs in
3 days! I wondered what I could do to help her to be healthier and
gain some weight. I heard several parents discussing the AA diet and
thought, “What do we have to lose?” We started her on the diet at
around 17 months. Soon after we started to notice that she was
becoming stronger, gaining some abilities back that we thought were
lost. She was able to use her arms more confidently, actually started
rolling side to side again, and held her head up better. While in the
pool and wearing her head float she used to just float there. She
began to kick her legs in the water and actually started to do spins!
Since starting bipap and the AA diet, Ella has not had one illness.
She has been so healthy and I know that her nutrition plays a huge
part in that! We are so thankful for all the the parents who were
willing to share their knowledge with us and now we want to pass it on

Ella’s Daily Mix includes:

  • 1 pack Tolerex
  • 1/2 pack Vivonex
  • either 4 oz of breastmilk or a jar of baby food
  • water to make 30oz.
  • 2 capsules of Solgar Essential Amino Complex
  • Vitamin D drops
  • 1 scoop of NanoVM 1-3
  • 50mg of Ubiquinol
  • 1 packet of Kids Coromega 3
  • Florajen 3 probiotic

She should get approximately 36 oz of fluids per day. I make her mix
to give her 30 oz and the rest by mouth. Ella eats regular meals and
snacks. I give her a 5 oz gtube feeding after breakfast, lunch, and
dinner (15 oz total). Some meals she eats great, others not as much,
but she is a toddler! For the most part we steer clear of dairy,
meats, etc. We use almond milk and she doesn’t eat much meat, however
she does occasionally have cheese on pizza or a bite of a chicken
nugget, she just doesn’t take much of it. Luckily, we do not see any
changes with these “exceptions”. I give the rest of the mix (the other
15 oz) to her overnight.

Additionally, Ella takes Albuterol syrup, Sambucol, and Claritin.

Based on labs we are currently adding some new things in to her diet:
calcium citrate, calcium ascorbate powder, iron, Carnitor, Vit K2,
Himalayan salt, and Cytotine.

We draw her labs every 3 months to make sure that she is on target.

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.