AA Diet Info for SMA

Based on Families Experience

Kennedy’s Testimonial

Kennedy’s testimonial, by Jennifer Swan

I am writing to share my experience with changing Kennedy from Elecare to the AA diet. Kennedy began having issues with motility and reflux in April, after I stopped giviing her breastmilk when my supplied dried up, and she was on Elecare alone — too much Elecare! With the help and advice of Jeanna Huette and Mary Bodzo, I switched Kennedy to Tolerex, donor breastmilk, prune juice, and a variety of baby foods. Within days of starting the diet, her reflux had stopped. Her motility improved, her secretions decreased, and she had more movement – moving her head side to side more easily; more spontaneous leg movement; and even more resistance/power in her arms. Kennedy also started gaining weight on FEWER calories than she had been on with Elecare. Since being on the AA diet, she has also recovered from illness faster than before she started the diet and it has been far easier to manage her nutrition during illness. I have played around with the organic baby foods she gets and am able to change around the fruits and veggies on a daily basis. It definitely took some time to figure out what worked and did not work for Kennedy, but it has been well worth the effort. In her first set of labs after she was changed to the diet, everything came back in range, which I feel is a tribute to Jeanna’s expertise in this area. I feel really good about giving her what she needs and helping her maintain her overall health.

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.