To some degree the Glut1 Deficiency kids who don’t have epilepsy or seizures are the kids who you can experiment on; who can be the guinea pigs for doing things with less rigidity and more flexibility. We keep asking ourselves, how strict should we be with a recovered wobbly little kid who does not have seizures, who will not loose seizure control, and who will not have breakthrough seizures. After an initial period of adjustment we decided to go off script a bit. Rationalization is a powerful thing.
We do this diet within a community — within the dietitian’s guidelines, but then we understandingly find ourselves completely on our own, customized to Drake, tweaked to what works for him and for our family. We find ourselves making our own roadmap of how strict we need to be. For example, having Drake eat more often and not at regimented times, helps him maintain his energy level and his mood. This diet is supposed to be a natural appetite suppressant, but no amount of advice from medical experts or online message boards ultimately deals with the stuff we have to live through.
We like to think we are heading in the right direction overall, and all indications are pointed that way, but we broke out of the box fairly early on and decided that we would not limit Drake’s calories or overly restrict his protein. This is a medically prescribed diet, but I still feel like we had to take a leap of faith in the first place for why he needs to be on a 3:1 ratio instead of a 2:1 ratio or a Modified Atkins 1:1 ratio. Why must a growing boy be forced to go hungry if his calories for the day have already been met? If his meal plan hasn’t been upgraded because of a growth spurt or he is having an “eating day” or a day filled with a lot of exercise should he starve to accommodate the calorie restrictions?
Even before the diet we found that Drake wanted to eat every two to three hours and then he still battled with fatigue and wanting to spend hours under a blanket watching YouTube videos. Even now with an altered Ketogenic diet meal plan to include three meals (breakfast, lunch and dinner) and three snacks a day, we find it is still sometimes too strict to adhere to and he needs an extra snack thrown in.
Our dietician thinks it’s more important for Drake to stay at or under his calorie limit so that he firmly stays in his ratio — but we think that it is more important for him to eat when his “Glut1 battery” is low so that his energy and moods are level. And besides, she doesn’t have to deal with him being hungry and completely crashing, gah! We feel like it is more important to get fat into him, even if it means averaging two to four extra carbs a day. If he is doing well, producing high ketones and not having ataxia attacks, should we keep doing what we are doing?
Now with the right food we can visibly see his Glut1 battery re-charging after a snack, topping off his energy levels for the next task. Before the diet, after a full day of school he would be head-in-hands, dizzy and ataxic at the end of the day. Now he can run and play after a full day at school, or focus on homework (well sometimes). We make sure Drake eats enough fat to stay in ketosis, but if he is over on his protein quota for the day, we don’t stress too much about it. If he eats two breakfast cookies for breakfast and then also wants a “second breakfast” of almonds and cashews, we accommodate that. Rationalization is a powerful thing.
Drake will be on this diet long term and what I do worry about is growth delays by being overly restrictive. So far Drake is growing tall and strong with no signs of delayed growth and in fact has gained 10 pounds and grown 3 inches since the start of the diet (I feel like the only Mom whose kid has gained weight on this diet, you usually hear about how underweight keto kids are). But I do worry that if we restrict his calories and protein too much he won’t be able to handle his growth spurts and run and play like he should. Also I’m 5’1″ and Ken is 6’3″ and as a short person I’m pretty (perhaps overly) sensitive to Drake’s growth being stunted.
You will find what works for your family. For us there is no cheating on the Ketogenic diet, ever. We are very strict about Drake eating only keto-friendly foods, but we are not strict about limiting his calories for the day.
I should add as a disclaimer: Drake was underweight when he started the diet and needed to gain a few pounds. We did cut back on the 50 grams of heavy cream at dinnertime so that he wouldn’t continue to gain weight like he has.
One thing that we have learned from the Glut1 community is that this is an entirely individual experience. The worst-case scenarios are heart breaking and terribly disruptive and terrifying to deal with. Every person’s needs ARE as unique as their DNA and for some, following the Ketogenic diet to a T is absolutely necessary and essential so as not to loose seizure control — but for us, letting Drake eat when he is hungry, is a simple beautiful thing.