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.
From Kate & Mark:
We are proud to announce the official Getty Owl Foundation website will be going live this Tuesday, September 20. We are so very excited to show you what we have created.
With the help of our friendly bees at Honey Agency, we have created a website with some really good content. We would also like to thank Sam Bonsett at Bonstar HTS for hosting our website. We would also like to thank our GOF Board for being the glue that keeps our foundation together. Or another metaphor that would work is you are the ores to our canoe. 🙂 We thank you all for your time and support.
So let me tell you all about it.
We wanted to create a simple design that was easy to navigate. Our hope is that it is user-friendly and everyone can find their way through with little confusion.
There is information about our family, about little Miss Getty, who is not so little anymore, almost 18 months :), and our mission as a foundation.
We have a section carved out just for SMA education. We provide some tools for visitors to learn about the #1 genetic killer of young children.
There have been some common questions that have come up since Getty’s diagnosis, so we grouped them into a section of FAQs; we hope you find that helpful. We have information on carrier testing, supportive information for the newly diagnosed, and an SMA Library to provide our visitors with some deeper knowledge of SMA.
We created an events section so people who would like to participate can be informed on how to raise SMA awareness and help us accelerate SMA research. We also show past events to give people examples of the kinds of things the foundation has done to fight SMA.
There is a place for you to shop, read articles, view pictures, participate, sign up for our Getty Owl Run/Walk coming in February, and read the Getty Owl blog.
Of course, our blog is NOT going anywhere … are you kidding? 🙂 I (Kate) would go crazy if that went away. The Getty Owl blog will be housed on the foundation website. You can still read and comment about our journey. If you have subscribed to the blog in past, you will still get those updates.
We would love your feedback. So after Tuesday, perhaps you can come back to this blog post and let us know what you think.
We like to think of the website as a living document, so it will always be updated and tweaked as we move along.
Please join us for the official website launch on Tuesday, September 20!
We thank you all in advance for your support. We certainly wouldn’t be in this position if we didn’t know that people were reading, listening, and participating. We are only one family, but this family is focused and passionate to end this horrible disease for not only Getty but for all children that have been diagnosed and will continue to be without a cure. Our mission is clear and our momentum is building.
Getty Owl is the winner of the 2011 Most Valuable Blogger award from Sacramento CBS13!
Getty Owl won as the People’s Choice thanks to all of your votes and support. Thank you to all who voted and helped spread the word!
Getty Owl was also selected as the Editor’s Choice! Thank you, CBS13!
We are elated to see SMA awareness raised in Sacramento and beyond. 🙂
I know I am late. 🙂 Alright so I wanted to thank everyone again for asking to Tell 5! the entire month of August. It was so much fun to mail our packets and then when more and more people asked, I started to really get excited about all the awareness that was happening. Thank you all for taking the challenge and perhaps next August I will think of something else catchy to get the word out about SMA.
We had some really pictures sent us and some great stories. I will post the pictures now and then at the bottom I will announce the winner of the Tell 5! Giveaway……………..
……………the winner of the $50 Visa giftcard and a CD of Sweet water Child, Lullabies for Getty was chosen by random.com is………..Angel G!
Thank you Angel for participating and I hope you enjoy both gifts. 🙂
A fellow SMA mother made me aware of this quick article in the September 2011 edition of Pregnancy & Newborn. Thank you Allison!
It is a quick “shout out” for Sweet Water Child, Lullabies for Getty. How cool is that? Have you bought your copy? Yes, well thank you. No, well that is easy to fix. 🙂 Click here to download. Hugs and Kisses to Alex and Angela for their talent and love in making this beautiful album a reality.
Here is a quick picture, again furnished by Allison. 🙂 Thanks for looking out for us.
Back in April, Pregnancy & Newborn sampled one of the Lullabies songs for their online April slideshow. Check it out!