Those of you who follow DITW on Facebook probably saw an article I posted recently on the ketogenic ("keto") diet. It's explained well and in terms that most people can understand.
Since Dean was a baby, we have been careful about carbs in his diet, as I learned from another mom of a child with PWS (see pwsnotes.org) about how people with PWS don't seem to metabolize carbohydrates well for energy. As he has gotten older, we have reduced carbs even more and increased protein for Dean.
Recently, we decided to take the plunge and move toward the keto diet, or more realistically, the MAD (modified Atkins diet). This involves not only a considerable restriction in carbs (many are aiming for less than 20 grams of carbs per day - look at your nutrition labels and you'll realize how little that is!) and ALSO an effort to push fats. It's hard to train your brain to *add* fat to anyone's diet, so it's a big change in practices with food. I was initially quite reluctant to dive in (ironic given the name of this blog, right?), but I realized that if Dean can potentially run on 8 cylinders, he was maybe only running currently on 2, maybe 3. We know there is more in that little boy that can come out. It was worth a shot.
The keto/MAD diet is a *medical* diet and therefore needs to be followed by a doctor and/or a dietitian/nutritionist. There are some dangers and concerns that require monitoring. We will be meeting with a dietitian soon through our Children's Hospital of Richmond to make sure that we maximize results and get Dean all the micronutrients he needs. One of Dean's doctors is following the diet to make sure his growth and other factors (related to labs and medication) are not adversely affected.
The keto diet is most commonly used for people with epilepsy, as it can result in the improvement or even elimination of seizures. The article above explains that there are other conditions that can or can possibly be helped by the ketodiet. There is reason to believe that PWS is part of that.
What have we seen so far? We've been really mindful of this change in diet for a little over a week. There is a clarity in his eyes that we have not seen before. You can SEE Dean trapped in that little body, as I've said from the beginning that I know he is in there. His muscle tone has (oddly) improved a *lot*, his problem-solving skills are better, and he's talking a bit more. I know that the benefits will continue. Other PWS families who have had their loved one with PWS on the diet longer report everything from increased motor skills to cognitive improvements to being able to consume more calories while maintaining weight (all considerable concerns in PWS!). I took this picture after noticing the change in him:
This requires that we be really diligent about Dean's diet. We read labels even more closely now and it's amazing how carbs are in *everything.* We are testing Dean's blood ketone levels every or every other night. Last night, he was at 1.6, which is squarely in ketosis. We're aiming for even a bit higher.
Many of you know that I don't cook because I generally hate it. And planning ahead for food goes against my usual tendencies. But success with this diet requires both. Thankfully, Pinterest comes to the rescue! I have created a pin board called "Ketokid" that many are following. Check it out! http://www.pinterest.com/acfshenk/ketokid/
So that's where we are! We are feeling confident about this step and I will be sure to let you know the continued results!