Thank you so much Vincent and Catherine Gaynor for providing me with this opportunity to share information based on my experiences with diet and SMA. Because there has been so much recent discussion about the Amino Acid (AA) diet for SMA patients, for my first blog post, I decided to give a little background on the origins and evolution of the diet.
My daughter, Krista, was diagnosed with SMA type 2 at 8 months. She never crawled, stood, or walked. I always had concerns about her nutrition and tried many different supplements and formulas. The one thing that always stood out in my mind was how quickly her strength deteriorated when I stopped breastfeeding and put her on dairy and soy formulas. Her next five years were filled with loss of strength and a lot of respiratory illness that resulted in numerous hospitalizations, despite very aggressive pulmonary care.
When Krista turned 5, a G.I. doctor suggested that we replace her milk based diet with an elemental formula. Within two weeks of making this change, Krista was a completely different child. Over the next several months, she had significant strength gains, dramatically improved g.i. health, and was staying healthy. Colds were no longer turning into complicated respiratory illness. Since then, Krista has never been back to the hospital during respiratory illness.
As we watched this incredible improvement, I knew I had to educate myself on nutrition and see if I could further improve her diet. It was difficult to find any guidance, because we were in unchartered territory. A knowledgeable biochemist helped me have a better understanding of the metabolic issues involved in a muscle wasting disease. He also advised me on labs that would be useful for making sure that Krista was receiving adequate nutrition. There was a lot of trial and error. I started adding additional supplements and went through a process of eliminating and adding in foods to watch for changes.
After several months, I started discussing Krista’s new diet with other SMA families. Many parents were interested and started their children on the diet. All of the children, type 1 and 2, showed improvements.
We changed Krista’s diet more than 16 years ago. Based on her level of SMA and the struggles she went through her first five years, we never imagined that she would be so well and stable. We absolutely attribute her quality of life to this diet. That’s the reason we have never stopped talking about her diet and continue to encourage families to consider the AA diet as an option for their child with SMA.
Over the last 16 plus years, we have worked with many families regarding diet and SMA and we continue to learn so much. Through their experience and feedback, we have been able to adjust the diet in many positive ways. We’ve learned that every child with SMA is different and will tolerate different formulas and supplements. It has been very rewarding to hear the positive feedback from so many families.
Currently, there are knowledgeable dieticians working closely with families and specialists to try to understand how the AA diet can be optimized. It’s my greatest hope that this will be accomplished in the near future.
I’ll be posting updated and more detailed information on the AA diet soon.