diet Archives - Epilepsy Dad

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.

A Sound To Break The Silence

For the past eight nights, our house has been silent. Our son has gone to bed and woken up without a seizure, without a sound. For the last few months, he has a string of seizures in the early morning, echoing their call throughout the house. But for just over a week, shortly after starting the ketogenic diet, his seizures had stopped, and I had just begun to forget that sound. I had just begun to stop expecting that sound.

But then, a day after he moved back in to his own bedroom, a sound carried up the stairs and down the hall. At first, I thought it was my wife singing in the bedroom, or the call of the fans rumbling through the hockey game on the television. But after my wife shut the door, and after I muted the television, the sound once again filled the room. Down in his room, our son was having more seizures.

epilepsy seizure

I got ready for bed and headed down to his room. Our monitors are still not here, and as much as our bodies resent the lack of sleep that came with having him staying in our bed, I wasn’t ready to trust that his seizures were temporary and that they wouldn’t cluster. So I found a space in the corner of his twin bed, and I laid with my son until he fell asleep. I listened as he had another handful of seizures, and another few in the early morning.

Although we are still very much struggling with some lingering issues during the day, I was eager to return to a quiet house at night and to a restful sleep. I was ready to assume that the noise I heard at night was my wife watching some terrible show on CBS or a drunken neighbor stumbling home after a night out. But for now, I must still keep that part of my brain active that can pick up every sound and distinguish Madam Secretary from a myoclonic seizure, from knowing which is damaging a brain in my house and which is just a seizure.

There are days like today when I wonder if I will ever sleep soundly again. I wonder whether I will over not worry that every sound I hear is my son having a seizure and whether I need to rush down to his room to make sure he has recovered. Living on the edge, all day and all night long, is taking a toll.

There is so much uncertainty, so much to react to, so much to be cautious about. But I am hopeful for the day when the worst thing that I will hear at night is another show on CBS.

Going Keto

Last week, we were inpatient at the Children’s Hospital of Philadelphia transitioning on to the ketogenic diet. If you’ve never heard of it, the keto diet (as those of us that are “in the know” call it) is a high fat, low carb diet that has shown to have benefits for kids with difficult epilepsies. The diet was codified in the 20’s, but it’s basically based on all those accounts of fasting doing amazing things for people thousands of years ago, including those stories in the Bible. Fasting causes your body to burn fat. When your body uses fat for energy, it produces ketones in the blood. Those ketones making it to the brain helps with seizures for some people. The diet basically mimics the fasting process by giving the body only enough carbs and protein as it needs to develop but otherwise giving the body only fat to burn for energy, producing ketones.

Different hospitals have different protocols for getting people on the diet, but CHOP does a week of inpatient training to make sure the parents are ready to support their child on the diet. It’s a lot of measuring, a lot of math, some cooking, and all geared towards making the diet as successful as possible.

This slideshow covers our week of admission. Learning to draw blood, cooking in the kitchen, meeting an Ultimate Frisbee Team and a professional NFL player. Bone scans, hair nets, IVs and food. It was a lot to process, and even writing this post took days after admission to craft.

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The diet doesn’t work for everyone. For those it does work for, some people have claimed a benefit during admission, others showed progress weeks or months after admission. However long it takes and whatever we need to do, we’re going to do everything we can to.