Two Years (And Counting!) On The Ketogenic Diet

Today is February 2nd.

Two years ago today, I watched Connor eat a Krispy Kreme donut for breakfast. He got about halfway through it before telling me he was full.

Krispy Kreme
A blurry cell phone snapshot of our last hurrah at Krispy Kreme

I tried to not cry when I asked him, “You’re sure? You don’t want even one more bite?”

“Nope.”

He was four, and he had no idea that this would be the last donut for a very long time.

We cleaned up breakfast dishes, loaded up in the car, and drove to Children’s Mercy for Connor to start the Ketogenic diet. Connor had suffered from a seizure disorder for 18+ months, and none of the anti-seizure meds we had tried had been able to completely stop his seizures.  Our neurologist thought the diet could do great things for Connor. She told me it was hard, but that she believed we could do it, and that Connor would do well because of our support.

I wasn’t sure I believed her yet. Both Ben and I were afraid to feel too hopeful.

When we checked into the hospital and got settled into our room, the nurse asked Connor what he had for breakfast. Connor said he had a donut, and a rush of shame came over me. I bit my lip because I feared otherwise I would launch into over-explaining mode. I don’t normally let my kids eat donuts for breakfast, I wanted to say. He only had it because we were about to start the diet.

As it turns out, me biting my tongue was good practice. I do it regularly now, because there are so many times I want to explain Connor and his food to the world.

Like at a restaurant when we don’t order any food for him.

Or the grocery store when people see Connor pick up a bag of marshmallows and smell them.

Or when others overhear him say things like, “Can I drink milk when I’m off my diet?”

I’m not exaggerating when I say that the week Connor started his diet was the hardest week of my life. I knew going in that the week would be intense. Any diet that involves a multiple day hospital stay and a team of dietitians training you is pretty hardcore, but some aspects caught me off-guard.

Like how Connor could no longer take his liquid, kid-friendly medicine. Now he had to take his two anti-seizure meds and his new assortment of vitamins in pill form. But he was four and had never swallowed a pill in his life. We had to grind up all 6 pills with one of those mortar and pestle things, and then we could add them to our choice of applesauce mixed with canola oil, peanut butter mixed with butter, or sour cream mixed with yogurt.

Getting Connor to eat it all his medicine took 90 minutes to two hours, twice a day.

The night we came home from the hospital (in a snow storm, and in desperate need of special groceries to accommodate this new lifestyle of ours) medicine dragged on forever. How could we ever have any kind of life if four hours of our day were spent spoon-feeding a disgusting mixtures of medicine into our son’s mouth? He kept looking at us like we were the enemies, and I wanted to tell him how much I hated this too. I wanted to tell him that it sucked, and that Daddy and I were on his side, even though it didn’t feel like it.

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At the hospital. When your body goes into ketosis, you often get the “keto flu” and feel pretty yucky.

The combination of it all stewed as I cleaned up the kitchen that first night home: The defiant, frustrated way Connor was looking at me as the clock ticked away minutes and hours while he stared at his medicine. The fatigue of having spent the last few days nodding and smiling at everyone at the hospital, assuring them that we could do this. How late it was. How long my to-do list was. How scared I felt.

I had a fork in my hand, and before I even knew what I was doing, I threw it as hard as I could.

The fork ricocheted off the sink, bounced out, and the prongs nailed me right on my brow bone. The moment could have been in a slapstick comedy flick, only I had never felt less like laughing.

I didn’t realize I was bleeding until Ben asked me about it. When I told him what had happened, he gave me a hug and advised that next time I should throw a washcloth.

I’m ashamed to say that after the first week, I hoped the diet wouldn’t work. This is a diet so strict, you can’t even hand your kid a stick of sugarless gum. We had agreed to try it for three months (that’s how long it takes to really test the effectiveness) and I thought, “How am I going to do this for three entire months?”

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Connor had only been on the diet a week when he had to go to his first birthday party. He brought popcorn (9 grams of popcorn to 14 grams of butter) to eat while the kids had cupcakes and juice. He was amazing.

Especially when on February 6th, just four days after checking into the hospital, and two days after my fork-throwing, we learned we were unexpectedly expecting a third child. I was 9 weeks pregnant.

By May, Connor’s seizures were better, but he was still having 10 to 15 a day. I called our neurologist, an amazing doctor who always called me back the same day and stayed on the phone with me for as long as I needed. I wanted her to say that we might as well get off the diet, that it obviously wasn’t going to work.

Instead, she told me that 10 seizures a day was far from ideal, but it was much better than 80-100, and she believed we should stick with the diet. I cried off-and-on the rest of the night.

But only a few days later, we had our first no-seizure day in seven months.

At first, Connor would go a day or two with no seizures. Then three or four days with them.

Then he would go a week with no seizures, followed by a day with a couple.

Then he went nearly a month.

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Connor, age 6, on the first day of kindergarten

And then June 23rd, 2015 we started counting seizure free days, and we haven’t stopped yet. We slowly weaned him off both of his anti-seizure meds, and for over a year now his seizures have been controlled by the diet alone.

If we are able to get to two years of seizure freedom, we will then try weaning him off the diet as well. We don’t know if that will happen, of course, but we feel much more hopeful this February 2nd than we did on this day two years ago.

Even though I know the diet is our miracle, I have a strong love/hate relationship with it. Daily, it seems, it breaks me. But Ann Voskamp articulates my feelings so much prettier than I can: “The miracle happens in the breaking.”

Indeed.

 

12 comments on “Two Years (And Counting!) On The Ketogenic Diet

  1. I read this twice (so far, will likely read again) and the thought that keeps popping into my head is that you are amazing. Connor is one of the sweetest, most well adjusted kids that I’ve ever met. You’ve done that, Ben too, by fighting this battle with him. He is beyond blessed to have you as a mom.

    1. Thank you so much, Ginger. When the dietitians told us that a lot of the kids really “own” their diets, I felt really skeptical. But he is so responsible about it, and the change we’ve seen in his personality since coming off his medicine has been incredible. Thank you for being so active about keeping him safe at parties and school. That is so encouraging to us!

  2. I totally just cried and laughed while reading your post. I love your transparency and honesty about the diet. No one can even begin to imagine the difficult journey this has been for you all. It may not feel like it now, but in the grand scheme of life, this is a small little blip on the map for you guys and Connor, and you all really have handled it beautifully.

    1. We remind ourselves of that too, Julie. That if everything goes the way we’re hoping it will, this is going to be some vague childhood memory of Connor’s. Eli won’t even know about it. With the way Connor’s epilepsy has dominated our family life these last three and a half years, it’s funny to think that one of our children may not even be old enough to remember any of it.

      Thank you for your support through it all! I was going through pictures of our time in the hospital and found one of the bag of activities you made for McKenna 🙂

  3. Such a hard and beautiful story all at the same time. I just love that sweet boy and love the victories (both big and small) that you are experiencing through this unimaginable process. Please tell him Mr. Scott says hi, misses him and is so proud of him!!

    1. Thank you for being such a great cheerleader for him on this journey! It meant so much to be able to leave him someplace safe on Sunday mornings so that we could refuel during church. He beamed when I passed along your message 🙂

  4. What to write in response to this? I admire your courage in telling this story without masking the pain, fear, and anger. It’s so hard to write a post like this—and, from a writing standpoint, this piece is so beautifully crafted as well. Thank you for sharing this huge milestone, and for walking ahead on this road for others fighting overwhelming odds. <3

    1. What a compliment, Tineke. Thank you!

      I’ve struggled to be honest about the difficulty of the diet, because I had in my head all these things I should be feeling. I should feel grateful that the diet worked for us when it hasn’t for so many others, and I should be thankful that we have hope he can be healed when so many families don’t. On and on.

      I came to realize that most of the time, I do feel those things. But denying that they’re jumbled in with feeling resentful, frustrated, or tired is dishonest. If I wanted the opportunity to encourage others walking the same or similar paths, I needed to be okay with being vulnerable about my imperfections. These are the hardest posts to hit “Publish” on!

  5. Oh my, I am so glad he’s doing well! I can’t imagine the daily diligence required to make this work, but that it is working is an answer to prayer and testament to your and Ben’s commitment. Before you shared your story, I didn’t even know what Ketogenic meant (still not entirely sure how to pronounce it LOL), so thanks for taking that daring step and sharing, Stephanie.

  6. Wow. I can’t even imagine. I’ve dealt with health issues, so I can relate to the hardness of having something that others can’t understand…. But I can’t even begin to relate to how much work and time and energy and love you have had to pour into making this work. Keep up the amazing work, Stephanie! You truly are inspiring.

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