Reese was off to a wonderful start on her new diet. The first few days, her seizures stopped. It was very encouraging. Actually, it was incredible. The last day of the seizures, we added Vigabatrin, but since it seemed that we were already on the path to reduced seizures, we went off it after a week. A few days later, she had 3 tonic seizures that lasted 30-45 seconds each. After these breakthrough seizures, I emailed our doctor and our dietician. Our doctor had us add back the Vigabatrin, but at half the dose. Our dietician said that perhaps we should try the stricter version of keto. We set up an appointment for a few days later. A couple days after we added the Vigabatrin, she had 2 more seizures during nap time. Coincidentally, the Epidiolex had finally been approved by insurance and we started it that day.
With the new 4:1 ratio, all of our meals are planned by our dietician. While making the meal plan, our dietician asked what kinds of foods Reese ate before. She was surprised how close a lot of the meals I had given Reese were to the 4:1 ratio. Not bad for a rookie – I admit that I was quite pleased with myself.
While both have (for Reese, at least) a maximum of 10 grams of carbs per day, on the 4:1 diet, the portions are smaller. With the Modified Atkins Diet, proteins aren’t limited like they are with 4:1. Cream (or another source of fat – cream has been our go-to) is offered and encouraged at each meal, but everything is a lot more relaxed.
Now, with 4:1, we measure everything down to the gram (or even hundredth of a gram). Each meal is 4:1 on its own, and we use spatulas to get every last bite. It’s hard when Reese asks for more food and we have to tell her no. It’s not hard for me as much anymore, but I can tell it’s still hard on family members. I can give Reese 1-2 snacks per day (we use KetoCal, a prescription only Pediasure-like drink, because Reese likes it and also because it’s 4:1 on its own so it’s easy). But if she gets hungry not long before a meal time, I have found that I have to tell her no. If she’s full going into a meal, she won’t eat all of her food, which isn’t okay. She’ll just eat the small amount of carbs and maybe a little of the other food. And then I have to basically force feed her, which just isn’t fun for anybody.
Since I’m a little OCD about things, when we were doing the MAD diet, I think we were closer to the 4:1 ratio anyway, so the switch hasn’t been very different for us so far, except that some of the quantities changed slightly.