AA Diet Info for SMA

Based on Families Experience

Guideline Documents

This is a useful tool for calculating calories, protein, fat and fluids based on weight and height guidelines. After opening the document, input your child’s weight and height and the low and high end of the guidelines will automatically be calculated. On page two, you can input your child’s formula mixture and nutritional values will change. There are instructions on each page. Page three has vitamin and minerals calculated from Tolerex and Pediatric Vivonex. Thank you, Jen Boro Peters for creating these very helpful documents!


*Please be aware that as a child’s weight increases, the ratio of fluid, calories, and protein to weight will gradually be less than the ranges given on these documents. This does not mean your child’s nutritional requirements aren’t being met.  You do not want to over-feed a child with SMA, but should adjust and monitor intake based on lab results, growth, and over-all health of the child.

*When calculating a diet for your child, it is highly recommended that you consult with a parent experienced in following accurate AA diet guidelines. There are many willing to share their opinions and experience on the SMA AA DIET face book group.

Click on link below to download documents:

Document For Calculating AA Diet

How to Video For Calculating AA Diet

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.