Reagan’s Story: Epilepsy & the Medical Ketogenic Diet

Reagan eating her medical ketogenic meal at a restaurant

First Seizure

It is a day I won’t soon forget.  March 2013, Reagan and I took a girls’ road trip to Connecticut for my cousin’s baby shower.  Reagan seemed off, and I attributed it to traveling and not being in her own space.  She was restless and found it hard to sleep in a different crib.  I scooped her up and had her lay with me. I awoke to her making odd sounds, drooling and grey, her body seemed limp, and she was unresponsive.  An ambulance arrived soon after, and we were taken to a local hospital to hear the words no parent wants to hear: “Your child had a seizure”.  Here I was in a city several hours from home, with my 16-month-old child, without my husband, terrified of what had just happened.  Thankfully all of my family was in town for the baby shower, and my mom, aunt, and sisters sat with me while I ran through Reagan’s already extensive medical history with the pediatric neurologist. Was she born full term? No, she was considered a late preterm baby.  Was she meeting her milestones? No, she had fine and gross motor delays, as well as speech delays.  Is she followed by a neurologist? Yes, and recently had an MRI, which didn’t show anything abnormal.  

Epilepsy Diagnosis

Yet, here we were. Reagan had experienced her first of many seizures.  Reagan was transported by ambulance from the hospital in Connecticut to our hometown children’s hospital.   We were later discharged with emergency medication and instructions for what to do if another seizure were to happen.  The nights and weeks following I slept on Reagan’s floor next to her crib, terrified of another seizure. Four months later, another seizure followed, as well as another ambulance ride and hospital stay. Two months later, after a move to Pennsylvania, yet another. Then came the diagnoses: epilepsy, as well as cerebral palsy.  It was a shock to the system. What did this mean for my nearly two-year-old? How would we manage this? Would she have a full life?

Antiepileptic Medications

Reagan started a medication, and any parent knows giving a medication to your young child can be like pulling teeth.  But we soon learned the tricks of the trade, making sure she was getting the doses when needed.  The first few months came with sleepless nights, feeling on edge and always wondering when the next seizure would come.  And they came, almost like clockwork every four months.  That “honeymoon period” of a seizure every four months lasted about a year and a half.  Then the seizures started to pop up more frequently, when Reagan was sick, when she was tired, and when she was overheated.  A second medication was added onto the first, and we achieved eight months of seizure freedom.  With our neurologist, we started to wean Reagan from the initial medication.  Unfortunately, that put us into a downward spiral of seizures and medication side effects. A new medication was introduced, and seizures came every two weeks.  A new medication came shortly after, and it slowly helped to space the seizures out. After months of the medication being just okay, the neurologist suggested adding in another medication.  With that came side effects that included extreme fatigue and loss of cognition.  My little girl was hiding in plain sight, in a heavily medicated fog.  For several months we worked through finding the right dose and finally it came.  The combination of those two medications has bought us three solid months of seizure freedom, but the side effects were still there.  And while some would consider that success, we didn’t.  For us, success was being both seizure-free AND side effect free. 

Enter the Medical Ketogenic diet

 At the end of 2018, at a routine neurologist appointment, my husband and I expressed our concerns about the side effects these medications were having on Reagan.  She gave us three options: the medical ketogenic diet, VNS, or brain surgery.  We weren’t ready for surgery just yet and given that I had some knowledge of the medical ketogenic diet and its success rate with children living with epilepsy, we knew that would be our next step. The months leading up to Reagan’s inpatient stay to begin the medical ketogenic diet, we prepared Reagan for her new lifestyle.  We explained to her this special diet could help make her feel better. We also went over the list of her approved foods and involved her in the appointments with the dietitian.  By the time we entered the hospital, she was ready, even though both my husband and I were anxious. During the five-day-stay, Reagan acclimated well to her new diet and enjoyed visiting the hospital’s Kids’ Club House, watching movies and making friends with the nurses.  She even got to visit the kitchen with the dietitian to make KetoCal® pancakes and a smoothie.

Reagan preparing a KetoCal pancake recipe

Reagan Today

Today, Reagan has been on the medical ketogenic diet for almost five months.  She loves the food, knows her schedule and knows that she must complete each meal. She’s always been a little foodie and often asks me to contact the dietitian for new and exciting snacks and meals.  The first month was hard on our family. The constant weighing and measuring were time-consuming and a little emotional.  But now we are in a groove, even eating out at restaurants and managing holidays. Reagan maintains good seizure control, and we’ve seen so many additional positive changes.  A little bit of that medicated fog has lifted already, she has increased attention to tasks, and those skills she seemed to have lost are coming back. The best part? We just received the go-ahead from Reagan’s neurologist to wean her from one of the medications! Since this was our main motivation for trying the medical ketogenic diet, we are thrilled!

Thinking back to that Mom who was scared and wondered what this would mean for her then two-year-old, I would tell her that epilepsy is a part of Reagan, but it does not define her. I would tell her that you will manage this head-on and become a better, stronger person and an advocate not only for Reagan but for all kids living with epilepsy.  Does Reagan have a full life? Absolutely!  Does her life look different than the neurotypical child? Yes, but Reagan has faced each and every one of these challenges from MRIs, to frequent doctor and therapist appointments, to medication changes to the medical ketogenic diet, head-on with a smile on her face. And when asked about her life, her response is “it’s fun!”

Erin Monast lives in the Philadelphia suburbs with her husband Travis, their daughter Reagan and dog Tag.  She writes the blog, This Is Epilepsy and is inspired every day by the strength and perseverance of Reagan.

I was paid by Nutricia for my time to write this blog post, however, my opinions are my own.

KetoCal is a medical food for the dietary management of intractable epilepsy and is intended for use under medical supervision.

To learn more about the medical ketogenic diet for the management of intractable epilepsy, visit www.ketogenicdietforepilepsy.com.

Vanilla Cake with Vanilla Buttercream Frosting Recipe

Chef Rachel Finn

She’s done it! – Chef Rachel, the amazing medical ketogenic diet chef, has come up with the perfect 4:1 cake recipe with the most delicious buttercream frosting! We recently debuted this cake recipe at the Glut1 Deficiency Foundation family meeting and it was a hit – lots of smiles, thumbs-ups, “yummy”s and requests for seconds from the kids (and some of the parents!). We hope you love it just as much!  

Note – You can also use this same recipe to make cake pops. This recipe is also available in a 3:1 ratio.

Makes approximately 6 servings (approximately 250 calories each). You can adjust serving size to yield desired calorie requirement. Ask your dietitian for help.

4:1 Vanilla Cake with Buttercream Frosting Recipe:

Ingredients:

  • 44 g KetoCal® 4:1 Powder
  • 42 g Almond flour (whole ground blanched almonds)
  • 46 g Egg (raw, mixed well)
  • 2 g Vanilla extract – pure
  • 2 g Baking powder – Calumet®* (Kraft®*)
  • 50 g Mayonnaise, Hellmann’s®*/Best Foods®*    
  • 40 g Butter
  • 60 g Cream, 36%
  • 7 g Pudding powder Kraft®* FatFr/SugarFr, Inst.Vanilla   

Directions:

  • Preheat oven to 325 F.
  • Weigh KetoCal® powder, almond flour, egg, mayonnaise, baking powder, and vanilla extract. Save cream, butter, and pudding powder for later.
  • Mix KetoCal powder, almond flour, egg, mayonnaise, baking powder, and vanilla extract in a large mixing bowl. Mix with a spatula until well blended.
  • Pour batter into a greased very small baking dish – we used a 7.5 x 5.5 x 1.8 (3 cup) glass baking dish.
  • Spread batter evenly in baking dish.
  • Place baking dish into the oven.
  • Bake for approximately 15-20 minutes, or until edges start to brown and a toothpick comes out clean. Keep a close eye on it as it bakes as oven baking times may vary.
  • While baking, prepare your frosting recipe.
  • Weigh heavy cream, butter, and sugar-free pudding powder.
  • Add heavy cream to a large bowl. Using a hand blender, whip cream until it starts to stiffen to whipped cream consistency.
  • Add pudding powder and butter to the same bowl with the cream, then blend until mixture is blended. Do not over blend or frosting will become too stiff. If this happens, add a small amount of water to thin out frosting.
frosting
  • Remove cake from oven and allow to cool.
cake
Cake without frosting
  • Once cake is completely cool, spread frosting as evenly as possible over the top.
cake with frosting
Cake with frosting
  • Serve immediately or store in the refrigerator. Note – frosting will melt if exposed to heat or direct sunlight.

*Optional, add “keto sprinkles” (granulated stevia leaf extract sweetener mixed with a dash of food coloring) on top of the frosting. If you do this, be sure to add the stevia leaf extract sweetener as an ingredient to the recipe and account for any extra carbs – you may need to add a bit of extra butter to the frosting recipe to even out the ratio.

Cake decorated with “keto sprinkles”

Makes approximately 6 servings of cake (about 250 calories per serving). Can adjust serving size to reach needed calorie amount.

One serving of cake
One serving of cake (shown with “keto sprinkles”)

Nutritional Information:

For total recipe:

  • Calories: 1515

Per serving (6 servings per recipe):

  • Calories: 252

For full nutritional information for this 4:1 recipe – visit https://myketoplanner.com/4299-chef-rachel-s-4-1-vanilla-cake-buttercream-frosting-recipe-from-glut1-conference.aspx.

To view 3:1 recipe, visit https://myketoplanner.com/4301-chef-rachel-s-3-1-vanilla-cake-frosting-recipe-from-glut1-conference.aspx.

KetoCal® is medical food for the dietary management of intractable epilepsy and is intended for use under medical supervision. Talk to your healthcare provider about whether KetoCal is right for you.

*Hellmann’s® and Best Foods® are registered trademarks of the Unilever Group of Companies. Calumet® and Kraft® are registered trademarks of Kraft Foods Group Brands LLC. Unilever and Kraft Foods Brands LLC are not affiliated with Nutricia North America and have not endorsed the proposed use of their products in this recipe. Specific brand names are referenced to ensure consistent nutritional composition necessary to maintain the medical ketogenic diet.

For more information on the medical ketogenic diet for the management of intractable epilepsy, visit www.ketogenicdietforepilepsy.com.


soft-ketogenic-recipes

Soft & Spoonable Ketogenic Diet Recipes

soft-ketogenic-recipes

We often get requests from caregivers for ketogenic recipes that are soft and spoonable for children and adults. Here is a collection of some of our favorite soft & spoonable ketogenic recipes.

Sweet Soft & Spoonable Ketogenic Recipes

  • Easy Chocolate Pudding (3:1 recipe) – This simple, kid-favorite recipe has just 3 ingredients!
  • Crème Brulee (4:1 recipe, 3:1 recipe, MAD recipe) – This rich crème brulee recipe is so good, you won’t even miss the carbs! If you need a completely smooth texture, be sure to skip the last part under the broiler, as this will create a crunchy topping.
  • Vanilla Chia Pudding (4:1 recipe) – This delicious and easy-to-make recipe is the perfect breakfast for busy mornings. Chia seeds have a unique consistency, so this recipe wouldn’t work for someone who needs a smooth texture.
  • Creamy Gelatin Treat (4:1 recipe, 3:1 recipe, MAD recipe) – This easy recipe has just 3 ingredients and makes the perfect keto-friendly gelatin.
  • Crustless Pumpkin Pie (3:1 recipe) – This holiday-favorite recipe is delicious all year round!
  • Ice-cream – Who says you can’t have ice-cream on the ketogenic diet? You will love these keto-friendly ice-cream recipes!

Savory Soft & Spoonable Keto Ketogenic Recipes

  • Pureed Cauliflower & Cheese (4:1 recipe, 3:1 recipe, MAD recipe) – This recipe can be easily modified to create a rich, smooth savory dish. To modify, add all of the cheese into the sauce.Then, add the steamed cauliflower and cheese sauce to a food processor and blend until smooth(you could also use an immersion blender).
  • Mashed Fauxtatoes (4:1 recipe, 3:1 recipe) – This simple recipe is a low-carb spin on mashed potatoes (made with cauliflower).
  • Sweet Fauxtatoes (4:1 recipe, 3:1 recipe) – If you’re a fan of sweet potatoes, you will love thislow-carb sweet potato dish

Mallory

KetoCal is a medical food for the management of intractable epilepsy and is intended for use under medical supervision.
Check with your healthcare provider to determine if these recipes are appropriate for you or your loved one.