TSA Approved Cooler Bag

Traveling by plane on a strict Ketogenic diet can be very challenging. But with a little bit of extra planning, preparation and work, the security check and flight can go relatively smoothly. Fingers crossed for no delays!

Traveling with young kids can be logistically taxing in the first place, and then adding in a restrictive diet can make it seem downright impossible, but it can be done with these tips.  Continue reading “TSA Approved Cooler Bag”

Out to eat as a family

When we first learned how rigid this diet can be we immediately came to the conclusion that we would have to hide in our house, stop going out to eat, limit our travel, and protect Drake from being exposed to a world full of off-diet choices. I despaired that Drake would be a food jealous, food unconfident, limited in his life experiences, sad little kid. Maybe I was a little bit overdramatic at first.

So after a few months we were happy to find out that we could still take Drake out to eat again if we were careful and managed expectations. We no longer went to our favorite kid-friendly restaurants, a Mediterranean Bistro and a Mexican Restaurant, but instead favored places with a really good hamburger. You can get a burger at a grill with no bun and it is generally pretty safe and only cooked in oil (but ask your sever if you have any concerns about hidden carbs). We stress to the server that Drake can’t take a bite without two sides of mayonnaise, and that usually does the trick for bringing the all important mayo with the meal. Continue reading “Out to eat as a family”

Rationalization is a powerful thing

Glut1 kid, Drake Lane, thrives on the high-fat, low-carb, low-protein Ketogenic diet. But how strict should a six year old kid who does not have seizures be?

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. Continue reading “Rationalization is a powerful thing”