For kids like Christopher food is their medicine. We learned this early on! Emory’s metabolic team spent hours explaining to us what they knew about LCHADD and how to do everything in our power to prevent a “metabolic crisis.” The key they told us was to make sure that his body had enough glucose that it did not need fat as an energy source, because oxidation of fat would lead to muscle breakdown. To ensure that he had a steady amount of glucose in his system, we fed him every three hours, around the clock as an infant. As he got older we were able to go a little longer during the evening hours while he is sleeping. Currently, at age three and a half, he eats about every 2 ½ hours during the day (or more often if we are doing an activity that requires a lot of energy like hiking or playing on the playground). He also awakes in the middle of the night (most nights) to grab a sip of his medical formula and something starchy to keep his sugar up while he sleeps.
So what does he eat all throughout the day? Well, a lot of fresh fruits, vegetables, beans, and rice. He can eat almost any vegetable but the key is how it is prepared. You cannot sauté his foods in olive oil or add just any kind of dressing to his salad. There is no butter on his potatoes. (Did you know sweet potatoes are actually really delicious without the butter? Who knew? Ry and I find them marvelous and
it is Christopher’s favorite food!) We have to be intentional about what kinds of crackers and breads that he eats, as these can be loaded in fat. Beans are great, but again, how were they cooked? And certain beans have more fat in them than others. (Did you know that 1oz. of chick peas has the same amount of fat as 1oz of chicken breast?) What is his favorite food besides potatoes, broccoli and pasta? Sushi! The main challenge is monitoring his intake of foods and making sure that he doesn’t have too much of the little amounts of fat…and they add up quicker than you could possibly imagine. We have also learned several ways to cook oatmeal and a yummy recipe for Tapioca, as he needs to have these starchy meals right before bed so he can go several more hours without food. Complex carbs store glycogen in his liver and gives him a steady energy source through the night!
He still drinks his medical formula, Lipistart every day. We call it his “Power Moo!” The other addition to his diet that is so important is cornstarch added to Gatorade or coconut water before strenuous activity…and of course MCT oil throughout the day. MCT oil is comprised of medium chain fats extracted from coconut oil. He can use this fat for energy, so it is an important part of his diet. We mix it into his foods and his drinks. One of his first phrases (outside of “Michael Jordan shoot ba-ball game.”) was, “MCT oil make body feel g-o-o-d!”
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