We’re wrapping up our first full week on the diet, and I think we’ve gotten “settled” in to our next normal.
You can read more about the ketogenic diet here.
In short, the boys are now consuming a diet of fats to protein + carb at a ratio of 3 to 1. (3 parts fat to 1 part protein + carb). The idea is to keep them in a state of “ketosis”, and switch how their bodies are being fueled. Carb consumption in excess can take them out of ketosis, which would be similar to skipping a dose of meds.
I spent much of Friday going through our products to determine what is keto friendly and what is not. The “not’ pile was far larger. Once you start looking, it is surprising how many products contain carbs, (often in the form of glycerin derivatives, or sugar alcohols). In addition to their food and drinks, some of the items we had to swap out included lotion, shampoo, diaper cream, chapstick, liquid medications, and toothpaste.
We’re set up for tomorrow with a day’s worth of bottles mixed, and a nice fattening snack prepared for tomorrow afternoon. (Squash plus butter). The powder meds are easy enough to handle. Twice a day, we will test their diapers (via cotton balls and ketostix) to ensure they are still in ketosis. Our next normal.
The hope is of course that this will reduce or even eliminate seizures and infantile spasms. If it goes well enough, it would be wonderful to reduce their prescription seizure meds (Onfi, Keppra, and Sabril currently).
I know it is early, and I know I am endlessly hopeful. But neither J nor I have seen a seizure or spasm the last couple of days. Focal seizures are somewhat rare. So going a few days without one is of course wonderful, but it is not out of the norm. Spasms, however, occur daily. Usually 5-10 times per day for Nolan, particularly when he is waking up. There’s a good chance we missed some activity. But even if we did, it was still “less”. Or “better”. A step in the right direction.
We are praying that their bodies continue to tolerate this plan well, and that we see the improvements we’ve been seeking for so long. Thank you for your thoughtful words and support this week and always.
Not everyone is sugar free around here these days though. I so enjoyed getting to spend time with K after a week apart. He made these masterpieces! Sugar or not, we’re blessed with three sweeties.