Life on the Ketogenic Diet – Breakfast

Author’s note: My six-year-old son, Connor, has epilepsy, which we control with a medical diet, the Ketogenic Diet. This diet is prescribed by a doctor and overseen by a team of dietitians. The Ketogenic diet is a high fat, low protein, low carb diet that causes the brain to run on fat instead of glucose. This has a calming effect and can be used to control or even eliminate seizures. These posts are meant to be a peek at what our life is like while on the diet, not instructions for how to do the diet on your own.

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I don’t speak much publicly about Connor’s medical diet. Not details, anyway. Connor’s medical diet is one of the hardest pieces of my life right now and despite repeatedly being told that I should blog about it or talk about it more, I don’t. Partly because it already sucks up so much of my time and energy, that then going to the effort to write about it doesn’t sound particularly fun. Also the diet and how it impacts our day-to-day life is so big and vast of a topic, I struggle to write short about it.

This will be long winded, and honestly, I’m not sure I’ve ever messed with a blog post so much as I have with this one. I’ve even scrapped it a few times. But I keep feeling the pull to write about the diet. The pull to document what our life is like in this season, with a child who at a glance seems healthy and normal, but who is on a diet so strict that we literally weigh every bit of food that goes in his mouth. And a diet so strange that I have actually spoken the words, “You don’t have to eat your carrots, but you do have to eat all your whipped cream.”

So, I thought maybe I would follow the great advice of Anne Lamott who talks about giving yourself short assignments as a writer. Today, I’m not going to walk you through Connor’s battle with epilepsy or all the ways I’ve failed or keto support group or any number of topics I could tackle.

Instead, I’m going to talk about breakfast.

Breakfast is our hardest meal on the Ketogenic diet. The team of dietitians at the children’s hospital tell us they hear this a lot. The thing is there’s no quick breakfast you can make. No bowl of cereal for mornings where you just don’t feel like eating a lot or when you’re running late.

Strange breakfasts he’s eaten since February 2015, when he started the diet, include but are not limited to:

  • Bacon with pats of butter on top of it. Heavy cream to drink. A tiny bowl of fruit.
  • Plain Cheerios or GrapeNuts that we pour oil over. Then we use heavy cream instead of milk. Bacon on the side.
  • A bagel and cream cheese. But the bagel is about a 2-inch section of plain bagel, and the cream cheese is actually a mixture of cream cheese and butter. And it’s about 1/3 to half-a-cup in measurement. Then there’s heavy cream on the side to drink.

20160729_083335_HDRBreakfast takes him at least 30 minutes, usually 45, and it’s not odd for him to still be puttering about the table after an hour. We can’t let him take any longer than that. Because it’s a diet of ratios (meaning he has to eat a certain amount of fat with his proteins/carbs for him to stay in ketosis) he needs to eat his meals in a certain amount of time. And he needs to eat all of it.

For breakfast this morning, I made him peach yogurt, bacon, and cream. Even this meal, which he told me was yummy, took 45 minutes. And he needs to be pushed through the whole thing before we walk up to school at 7:50 a.m.

Everything we make–every bite that goes in Connor’s mouth–is weighed out and calculated in grams. We have a special program that we use to make meals for him, and then before we can feed them to him, one of our20160729_084548_HDR dietitians at the hospital has to look it over and approve it.

This means there’s no, “Oh, look, cherries are on sale! Here, have a cherry, Connor.” Instead, I’m getting on-line, logging into the KetoCalculator, creating a meal that’s at Connor’s specific ratio and calorie amount (every meal of his has 450 calories). Then I have to get the meal approved, and then Connor can finally eat his cherries.

The meal I made him for breakfast this morning is pretty easy as far as Keto meals go. The “yogurt” is actually made from his vanilla pudding, which I made the day before. When I make a batch of Connor’s pudding, it’s 200 grams of heavy cream, 40 grams of oil, 100 grams of water, and 20 grams of Jell-o sugar-free instant vanilla (or chocolate) pudding mix. We usually use it as a dessert, but a few weeks ago I had the thought, “If I put fruit in it instead, maybe it would taste pretty close to store bought yogurt.” So 20160729_085446_HDR after building a meal and getting it approved, this morning I weighed out 45 grams of a peach (which is about a quarter of the whole fruit), diced it, and then smashed it with a fork. I added 86 grams of pudding and stirred them together. With that, he had 11 grams of Kirkland bacon and 27 grams of heavy cream.

Here is what will likely happen. Connor will love this meal for a bit – anywhere from a week to a month. He’ll request it daily, he’ll eat it in 30 to 45 minutes with no complaining, and minimal prodding comments from me like, “Connor, I love your stories but you’re not eating. You can talk again once your cream is finished.”

Then I’ll have to start prodding him more. He’ll linger at the table well after the rest of us are done. He’ll start telling me it’s yucky, that he doesn’t want to eat it. We’ve done this time and time again in the 18 months that we’ve been on the diet.

I will feel frustrated and remind myself why we’re doing this. I will make myself think about days when Connor would have 100+ drop seizures a day. When he was on three different medications to control his three different types of seizures, and none of them were doing what the diet has done.

Connor has been seizure free for 14 months now. His epilepsy is controlled purely by the diet. We’ve been able to wean off all his medications and watch him come alive. If he can stay seizure free for another 10 months, we can try weaning him off the diet. Thinking about some  magical day in the future where Connor can bake with me again and snitch blueberries without us weighing it out and balancing it with heavy cream is both exciting and terrifying. What if he starts having seizures again? What if we have to keep doing this diet?

One day at a time, we keep telling ourselves.

17 comments on “Life on the Ketogenic Diet – Breakfast

  1. Wow. I’m inspired at the dedication and time this takes, and what an amazing outcome. Fourteen month seizure free! Congrats to you and your family, Stephanie! I will make sure to keep you are your family in my prayers.

  2. This brings tears to my eyes. Such a struggle ,so life changing. And yet so rewarding. Sometimes when things seem hard ,we need to remember others have it harder. Thanks for that reminder .Thank for the vision into your mornings,I don’t forget you have 2 other children who need you too. Will hold you in prayer. You do an awesome job !!!

    1. Thank you, Karen! Even with Connor when I’m feeling discouraged or woe-is-me, I try to redirect my thoughts on how fortunate we are to have found something that works and that his epilepsy won’t necessarily be a lifelong condition. I’m not always great at that, and your daughter is very kind when I send her my complaints throughout the day 🙂

  3. You are both amazing parents. I enjoy hearing about the success Connor is having with his diet and learning more about the daily routine. He is a sweet boy and your post is a great reminder to us all for what we take for granted. Keep up the good work!!

  4. You worried this would be whiny? Exhausting and awe-inspiring come to mind, but certainly not whiny, Stephanie. You and Ben deserve extra helpings of grace and huge measures of admiration for what you’re doing for your son and his future. I’m sure he will know – someday – all you’ve sacrificed and how hard you’ve worked against the odds to help him actially beat this and not continue to depend on pharma – which is easier, but certainly not healthy long term, or potentially permanent.

    Good for you, Mama. Where would Conner be without you?

  5. My first reaction is to marvel that food can manage so much but as someone with another rare disease in understand the daily battle. It isn’t easy at all, especially when it’s a young child and fears creep in from all angles.

    What I know is God sees your struggle, is aware of it and every second you guys feel like quitting but keep going, He will ultimately reward you for you faithfulness ♡

    I’ve been whining about having to start a new medical diet myself. I’m already gluten free & dairy free, I don’t want to be more restricted but it’s not nearly as challenging as keto. I can be encouraged by your families endurance 🙂

    1. Oh, Tonya, I understand. I’m often very grouchy about Connor’s diet, and I’m not even the one who has to eat the stuff! I hope the diet brings the healing that’s needed. We will endure together!

  6. This was moving to read. The compressed way you introduced the topic speaks volumes about how hard this is to write about. Thanks for the bravery of sharing. That you continue to take on new writing challenges when you have to spend so much time and emotional energy on meals—and you have a baby again, too—is amazing! I am in awe.

    1. Tineke, thank you! The first time I tried writing about Connor’s diet, I had gone on for about a thousand words, decided it was a dumb idea to even try, and was crabby for the rest of the night! Since Connor started having seizures, I’ve learned a lot about what it means to have a full/busy life that’s full/busy with things you didn’t choose or want. There are lessons in this season that I haven’t enjoyed learning, but that I’m grateful for all the same.

      And it’s made easier by people like you who encourage me and who give me a light teaching load at the summer workshop 🙂 Thank you!

  7. Awesome job mama to stick with something that is incredibly hard to maintain!! I couldn’t imagine the struggles with it. So happy that is working for you guys and you are able to take away the medicine and see your child live! Best wishes!!

  8. Oh Stephanie, this is amazing. You are amazing. This post made me feel overwhelmed so I can only imagine the toll it takes on you guys. Yes the result is worth it but it is more than ok to have complaints along the way. Connor is a lucky kid to have such a loving and supportive family!

    1. Thank you, Tori! I try to not complain too much because I know we’re fortunate to have had the results we’ve had, but I’m also learning there’s value in sharing honestly about the struggles of our day-to-day eating life 🙂

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