Diet and best practices regarding nutrition is a very serious topic when it comes to our children. How do you properly nourish a child who is not expelling energy? How do you make sure a child is getting all the necessary vitamins when they are not able to eat what a child that can swallow can eat? Better yet, if a child with SMA who has only about 10% muscle mass compared to their counterpart that has 40%, what dietary direction to you take to make sure they are properly fed?
Since Getty was about three months old, she has been eating Enfamil Gentlease formula. I was lucky enough to produce breastmilk for a few months, then we needed to find a suitable replacement. Gentlease, at the time, seemed to be the answer. It was easy on her stomach and she tolerated it fine.
Mark and I really had not educated ourselves with other options for children with SMA. At the time, we were fighting and uphill battle with doctors on her respiratory care. We had to concentrate on the most important thing at the time, her lungs, and then pick up the nutrition battle when time became available. She wasn’t gaining an alarming amount of weight and we just put it on the back burner, by necessity.
When Getty turned one, we knew that we were going to have to make some changes. For any child, after one, there are just more things they need nutritionally. But for an SMA child, it is just so different. It is such a science to be able to adequately nourish them and, at the same time, provide supplemental vitamins and liquids to help them thrive. It is a delicate balancing act of calories, weight, and length.
The original plan came from our gastro doctor who recommended we just put her in the next toddler form of Enfamil. After many discussions with gastro it was clear that her knowledge on proper dietary needs for a child with SMA was limited . . . severely limited.
Having said that, she had the foresight to get us in touch with a Metabolic Nutritionist. We were able to meet with her in July, right after Getty got back from the hospital. We discussed a diet that has been very promising in the SMA community. The Amino Acid diet has been doing wonders for our kids. We knew we wanted Getty to start on it, but knew we needed some kind of medical research to make this happen.
The AA diet, in a nutshell, is an elemental free form amino acid formula. This elemental formula is produced from nutrients in their most broken down form. So for Getty and her friends on the diet,since it is so broken down so far, they don’t have to work so hard to digest it. In turn, they conserve energy in digestion that can be used in other ways. Milk and soy are eliminated. It is quickly digested and absorbed into the bloodstream.
After much discussion with the doctors, SMA community, and some incredible advice from a few amazing SMA moms, we started it. We were so freaked out to change over because Enfamil was easy. You just throw a couple scoops into some water and you are done.
The AA diet is like a science lab. Packets of Vivonex, juice, syrup, capsules, scoops of powder, a dash of salt, etc. You blend it up into a smoothy of sorts and voila!
It is best administered very slowly. You add each new ingredient in the diet every couple of days to make sure the child tolerates everything. We watched Getty very carefully, constantly watching her vitals, poop, temperature, weight, etc., hoping she wouldn’t vomit. We started the diet in August and we are just getting to the point where she is taking all all of the AA diet ingredients. She has tolerated it like the champ we knew she would be.
Here is the kicker: this diet has little research to back it up. It is one of those things where you know it works for our kids based upon the experiences of so many SMA families who have tried it on their own. You know that they benefit, but there is little research to prove it works. I will bet you that if asked, most parents who have or had their child on the AA diet would positively back it. We are just at the beginning of Getty’s full transition to her new diet and I would back it in a heartbeat.
Let me tell you what Getty can do now that she is on the AA diet that hasn’t been able to do in months:
1. She talks tons. Before this diet it was almost like she was choosing her times to chat with us very carefully, because she used to get so tired after conversing with us. The movement in her tongue is increasing and she is starting to use it to form more sounds.
2. Her movement in her hands and wrists has increased tremendously. She can now move her hand to her mouth. She hasn’t been able to do that since she was about 4 months old.
3. Her movement in her feet is slowly coming back.
4. Her head and neck movement is slowly getting better. Before she was just lay still, but now she is trying to move her head slightly.
5. Her overall well-being is better. She is so happy and so full of life. Before, Getty would get tired very fast and we were worried that because of her diet, it was internally slowing her down prematurely. Since the transition to the AA diet, we are convinced that was the case. She was getting too much protein and fat which was bulking her up and was not healthy for her.
6. Getty sleeps very deeply now. Her sleeping heart rate is in the 80’s, which is perfect for a restful sleep. This, in turn, gives her more energy for the next day. Before, her sleeping heart rate was up in the 100-110’s and she would often wake up in the middle of the night.
As a mom, I can tell you that all of these things are helping me “keep it together.” I know she is happy and my hope is that this diet will also help her fight off or recover from sickness as well.
One other thing that I am very happy about, and I know it is purely for selfish reasons, but I get to feed her real food. I know that might sound weird, but there is just something so basic, but also so beautiful, about feeding your child real food. I get to give Getty squash, apples, and prune juice. That feels good to me. As she gets older, we can try more fruits and vegetables to add to her smoothie. I simply can’t wait!
I know I have said it before, but I will continue to say this: Mark and I truly owe Getty’s life to our SMA family. Her diet, among other things, has given us the tools we need to continue to help her thrive.
If you know of another SMA family, I am sure you know exactly what I am talking about. We are all trying to do the best we can for our kids and it seems as though we are ahead of research when it comes to so many things. We are all living the practical side of this disease, and often times we find that the best resource we have is each other.