AA Diet Info for SMA
Based on Families Experience
Labs
Here is a list of labs that should be checked frequently in very young children and in those just starting the AA diet. Once a child is older and not growing as quickly, every 6 months is suggested. If there are digestive issues that develop, parents may opt to request them more frequently. The information from these labs is used as a guide for making adjustments to calories, protein, and fat, in a child’s diet.
- Quantitative Amino Acid Profile
- Essential Fatty Acid Profile
- Magnesium
- Phosphorous
- CBC with Differential
- 25 hydroxyvitamin D3
- Basic Metabolic Panel (includes: glucose, calcium,sodium, potassium,carbon dioxide, chloride, BUN, and creatinine)
- Carnitine, total, free, and esters
- Zinc
If possible, this testing should be done in between feedings, or if your child is on a continuous feed, then they won’t be fasted before the labs are drawn.
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.
