This week we started Gwendolyn on a new food regimen, the Amino Acid (AA) diet. This represents a pretty big shift for Gwendolyn and we are appropriately nervous. Any change is always worrisome, but we are also hopeful that the AA diet will benefit Gwendolyn's overall energy and health.
Gwendolyn was fed breast milk for as long as we possibly could — about 10 months of her life — and since then her diet has consisted primarily of soy (first Enfamil Prosobee Soy Infant Formula and then we transitioned to the soy based pediatric drink, Bright Beginnings) with a small amount of prune juice administered via g-tube. We've never been opposed to the AA diet and we've talked about it with her doctors many times before. It is no doubt clear that there is strong anecdotal evidence that supports the potential benefits of the diet for children with SMA. And we know many families that do really well on it — some even swear by it. Further, I think the AA diet makes a ton of sense from a theoretical standpoint — milk, soy, and most other food proteins are eliminated and substituted with an elemental free form AA formula that is made from nutrients in their most broken down form and, therefore, require less energy to digest compared to standard formulas. Less energy digesting leads to more energy available for breathing, etc. Makes sense to me.
For us, our resistance to changing anything with Gwendolyn, including her diet, has always been and always will be based on — well, Gwendolyn. If she's thriving, we don't change anything. And she has thrived on the soy diet. However, over the past several months, we've noticed a rapid decrease in Gwendolyn's energy and increase in need for respiratory support which has led to her being on her bipap more or less 24/7. We recently went to Stanford to change her bipap machine to allow for increased respiratory pressure settings to provide her more breathing support and, while the transition to the Trilogy has gone well, the reality is that this change is only a bandaid. Gwendolyn is no longer thriving. And whether it is the continued progression of her SMA or something else, we felt that now was the time to try whatever we can to help give her more energy — thus, our switch to the AA diet this week.
Gwendolyn seems to be doing well with the new AA diet thus far — although it has only been a few days and she has yet to be fully transitioned. She seems to tolerate the new formula Vivonex Pediatric, which is the base of the AA diet, and over the next few weeks we will slowly add in pureed vegetables. We're battling some early constipation issues, which is common with SMA but new for Gwendolyn since the switch. We're pretty confident that we'll be able to keep her regular once she stabilizes on the diet, so this isn't too worrisome. Other than that, we haven't noticed any major changes (good or bad).
We are nervous. We are hopeful. And, as always, we are realistic.
I talked to Gwendolyn in detail about her new diet before we started last Saturday and I asked her to let us know if anything felt differently. She listened very intently and then responded, “Gah!” (yes). On Sunday I asked Gwendolyn if she felt okay on her new diet. She said, “Gah”. Then I asked her if she loved her new diet. She said, very, very intently this time, “Gah!, Gah!”. I love that girl 
Shira — SMA Type I and 5 years old) for his thorough and patient assistance getting us set up on the AA diet. There is no way we would have been able to get comfortable with the switch without his guidance. Thanks Brad! And thanks also to our team of doctors at Lucile Packard Children's Hospital at Stanford and to Dr. Mary Schroth and her team at the University of Wisconsin for working together on an AA diet plan for Gwendolyn. We appreciate all of your help and collaboration in coming up with what will be appropriate for our little girl. We appreciate you all!
So bottoms up! Here's to a new diet and hoping Gwendolyn really, really likes it!