keto Archives - Page 2 of 8

The Night Watch

Every night before he goes to bed, my son takes a handful of pills.

The pills are the last line of defense that my son has against the unrelenting seizures that constantly lurk on the horizon. Especially at night, when his brain slows down to recuperate from the day, my son’s brain isn’t strong enough to defend itself against attack.

His medication is meant to strengthen his defenses so that his brain can rest. They are the guards on the parapet defending the residents inside the walls throughout the night. But the gaps in my son’s wall are too wide for the guards to cover. It’s not a question of whether a seizure will break through; it’s how many. It’s how much damage will the attackers do before the sun rises.

We’ve tried to boost his defenses. New medications. The ketogenic diet. VNS surgery. But none of them have prevented the nightly raids from exacting their toll on his developing brain. Even combined, they are no match for the electrical storm the flows wildly across the neurons and floods the cells.

It could be worse. It has been worse. Before we knew what this was, the flood nearly took my son. The uncontrolled pulses flowed through the gaps in his natural defenses and eventually breached them entirely, leaving his body frozen and his mind disconnected. We managed to beat back the invader and rebuild. We strengthened the walls. We bolstered the night watch. But our seizure calendar records the history of attacks, painting cells with yellow markers revealing every defeat in long ribbons of sequentially colored squares.

Every night before he goes to bed, my son takes a handful of pills because there is nothing else to do. We stick to our routine because it is better than the alternative. His pills, his diet, and his VNS play their part. But as he drifts off to sleep, I turn on the monitor and take my post watching over him, too. Because it’s my job on the night watch to be there when his defenses ultimately fail, to comfort him after the attack, and to help him rebuild the next day before we do it all over again.

Traveling On The Ketogenic Diet

We love to travel, so when we started on the ketogenic diet four years ago, I worried that the diet would close off the world to us. We could still go to Colorado and Florida because we had friends and family there with kitchens. There were also stores where we could buy ingredients for his meals and pharmacies if we ran out of medication. But what about the places where we would be on our own?

Our first big trip was almost two weeks in Hawaii. I wasn’t sure how easy it would be to find specific ingredients we would need to make food. I also didn’t know if we could find a room with a kitchen, so we prepared as much food as we could to take it with us. It was our first time traveling with a cooler, so I read through the TSA rules to see where they stood on traveling with ice. I researched coolers to find one that would fit enough food but wouldn’t be too big to carry on the airplane. The week before, we made enough food so that we had meals available for the entire trip. The cooler was heavy, but it allowed us to enjoy our trip without worrying about staying in ketosis.

This year, we went to Panama. At least in Hawaii, there was an ABC Store on every corner. In the remote places we were going to in Panama, that would not be the case. It was also not likely that the closest store would have the specific ingredients we needed. There would also not be a pharmacy to stroll into if we needed a prescription. Again, I hit the internet to read about bringing medication and food internationally. There were no specific restrictions about bringing my son’s food into the country, so we again prepared enough meals to cover the trip plus a few extra days. Even though we were staying in homes with kitchens, making the food ahead of time removed many variables. We also upgraded our cooler to a backpack to make it easier to carry on those long travel days.

Now, traveling on the ketogenic diet feels routine. We prepare the food ahead of time. We know the routine to pack and get through security. And we no longer worry about the world being closed off to us. If we can make keto work in the mountains of Panama, we can pretty much make it work anyway.

If you’re looking to travel on keto, here are a few tips:

Find complete meals you can prepare ahead of time. Ideally, it’s also food that can be frozen, like ice cream, pizza, and pancakes (syrup went in checked baggage). Some restaurants will heat food for you, some won’t. Keep that in mind when you plan the meals.
Make sure everything is frozen. Freeze all of the food for the journey and use the blue ice packs to keep everything cool. Make sure the ice packs are frozen, though, because TSA won’t allow them through if they aren’t.
Keep a letter from your doctor handy. If a situation arises where you may need to explain the diet, a letter from your doctor can come in handy.
Don’t forget utensils. Not every segment of your journey will have access to forks and spoons, so bring some with you. Plastic, disposable utensils are best because washing silverware while traveling is not always possible.
Get to the airport early, just in case. We generally get pulled out of line by TSA when they scan the cooler, so having the extra time creates a more stress-free experience.

My final piece of advice is don’t be afraid to travel. It is a big, amazing world out there with so much to see. The ketogenic diet doesn’t need to prevent you from experiencing it.

If you have any questions about traveling on the ketogenic diet, feel free to leave a comment or send me a note.

The Ketogenic Diet Is A Family Affair

On the morning of New Years Eve, my wife and I got a head start on our healthy new year resolution and went for a run. We left our son sitting on the couch watching his iPad with my mother-in-law sleeping in the next room.

Over the past few months, my son (who is on the ketogenic diet for epilepsy) has been sneaking food, so we took the precaution of hiding any tempting holiday treats on top of the refrigerator. Before we left, I looked my son in the eye and told him that we would be right back and to stay on the couch. He nodded in agreement and nestled comfortably in to the corner with his blanked.

When we returned, he was still on the couch. When I asked him, he confirmed that he hadn’t moved but he wouldn’t look at me when he answered. I glanced in to the kitchen and noticed that the step stool that we have under the counter had been moved. On top of the fridge, I could see empty containers of leftover deserts.

I looked back at my son and his head was down. “It was me, ” he said softly.

There has been a lot of this lately. He’ll sneak crackers from the pantry or leftover spaghetti from the fridge. A few weeks ago, he took a bite out of a tomato at a grocery store.

I am both heartbroken and frustrated. I’m heartbroken because of how restrictive the diet is for a 9-year old boy who sees the people around him eating whatever they want. As his father, I’m frustrated because his initial instinct is to lie and the foundation of our family is built on love and honesty. But I’m also frustrated because I know I have a hand in making the environment tempting for him by keeping unhealthy food in the house when the stakes are so high. Where a typical kid would just get an upset stomach from eating too many cookies, my son falls out of ketosis which could lead to an increase in seizures.

He’s been on the diet for more than 3 years. That’s a long time, and these recent incidents of sneaking food are starting to grind down my resolve. I’ve gone from thinking that the diet partly helped saved my son’s life to questioning whether it helped at all or if he still needs to be on it with his new medications and his VNS. I’m collecting evidence to support my theory but deep down I know it’s tainted with confirmation bias because I don’t want the diet to be working.

I want there to be an easy way out. It’s would be easier if there were a clear indicator that the diet was making a difference. It would be easier to stop the diet to remove the strain we are feeling instead of figuring out what other modifications we can do to make the diet more tolerable. But like so many things that come with an epilepsy diagnosis, it’s not that easy. It’s also not easy as a parent to feel like your child is missing out on something when his life is already so hard.

But there are things we can do to not make it harder. We can make better dietary choices ourselves and not have the tempting food in the house. We can make a big deal out of eating better and stressing the importance of diet for our health, the same way his diet is important to his health. We can be his parents, and take on some of the burden ourselves to alleviate some of his. Because if we can’t make it all go away, we should at least show that we are in it together.