Coco’s Ketogenic Diet Story

My sweet Coco just celebrated her 7th birthday! Coco loves being outdoors, swinging and listening to Taylor Swift.  She has the most infectious laugh and is always ready to say hi and make new friends! Coco has two older and two younger siblings that she loves to try to keep up with!

Infantile Spasms:

When Coco was just 4 months old she was diagnosed with Infantile Spasms, a rare and catastrophic form of epilepsy.  Our world was turned upside down with hundreds of seizures a day that left Coco weak and miserable. We had noticed something was different about Coco around three months old.  She wasn’t making noise, she slept often, and it seemed as though she suddenly couldn’t hear or see us.  One night she looked like she was startled by a toy. It happened again, and again and again.  I videoed and drove her to the nearest emergency room.  We were assured that her movements were “normal” infant jerks. It continued at home that night so we went to a hospital with a pediatric emergency room.  We were admitted for an EEG, MRI and several blood tests.  The neurologist diagnosed Coco with Infantile Spasms and explained to us that there was a high chance of severe developmental delay.  We were devastated.  We started a gold standard medication.  After two months, it wasn’t working so we tried another front line.  And then another.  None of them were working and Coco was having hundreds of seizures a day.

The Ketogenic Diet

After failing several medications, we traveled to Detroit when Coco was just ten months old to meet a neurologist specializing in Infantile Spasms. He suggested we try the ketogenic diet.  We had run out of options and were desperate to stop the seizures. I came home and called our local hospital and another hospital with a big keto program to get Coco started.  Both had extremely long wait lists and we knew waiting wasn’t an option.  The specialist in Detroit agreed to help us start the ketogenic diet and within a week we returned and were admitted to begin the diet.

We spent a week learning about our new life with breastfeeding, purees and keto.  Our dietitian was extremely supportive of me continuing to nurse so she came up with a “recipe” for us combining breast-feeding and other keto ingredients.  We also learned to mix purees with butter for meals.  The first few months on the diet were extremely difficult. It was a big adjustment to make all meals using a gram scale and being worried about every little thing including the shampoo Coco bathed with. We slowly started noticing a decrease in seizures and after six months of being on the diet, we had seizure control.  Once Coco’s seizures were under control, she started making progress, first learning to hold her head up without support and then sitting up!  The ketogenic diet was our miracle!

KetoCal®

As a toddler, Coco continued to struggle with purees and we had a hard time getting her to take in anything including water.  Our neurologist suggested trying the ready-to-feed KetoCal® 4:1 LQ Vanilla. It was life changing! It’s easy for “on the go” and for the past five years it’s been Coco’s primary feeding source.  We travel often and KetoCal 4:1 LQ is easy to pack and take anywhere!  Coco has been on the ketogenic diet for 6 years now and KetoCal has been an invaluable aide every step of the way.

The ketogenic diet has become second nature to our family.  We know exactly what Coco needs and what she can and can’t eat.  It’s sometimes a struggle explaining the diet to others and even though she can eat meals that have been measured and mixed correctly, it’s difficult to trust that she’ll eat everything correctly at school and summer camp.  KetoCal makes it worry free- we can send in her ready-to-feed KetoCal 4:1 LQ Vanilla and know that she’s getting the correct ratio and there’s no risk for error.

Coco’s Life Today

Coco had a tough battle the first months after her diagnosis and she is severely delayed.  She’s non-verbal but can show preferences toward certain things and is learning to communicate with noises and gestures. She’s non-ambulatory but we haven’t given up on trying to learn to walk!  She just finished first grade and can identify numbers 1-4 and some colors! We still don’t know what caused Coco’s Infantile Spasms, despite countless tests and traveling to see world-renowned specialists.  The ketogenic diet has given Coco a better quality of life and has been our saving grace!  We’ve tried weaning Coco from the diet a few times over the past few years and have been unsuccessful. We lose seizure control right away each time. We’re hopeful that one day she’ll be able to enjoy meals and treats with the rest of the family but for now we’re thankful the diet keeps the seizures at bay.

We were originally told we only had two or three years at most with Coco and here we just celebrated her 7th birthday!  I’m forever grateful for the specialist that led us to the ketogenic diet and for KetoCal for making our daily lives so much easier!

Advice for Other Parents

Lastly, my advice to any parents thinking of starting the ketogenic diet with their child: Make a six-month commitment and stick with it!  The diet can be a challenge but with tweaking and learning what works for your child, it’s worth it!

-Shelly

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

KetoCal is a medical food intended for individuals age 1 year and up. It is intended for use under medical supervision. 

The ketogenic diet for epilepsy should be used under medical supervision. 

Please note that this is one family’s report of their experience with the ketogenic diet and may not be the experience of others. Individual results will vary. Please discuss the potential benefits of the ketogenic diet with your healthcare provider.

Fight Flavor Fatigue- Spice Up Your KetoCal!

Moms, dads and other caregivers know that kids often change their minds, especially when it comes to foods and flavors. We all have our favorites but a little variety can help to prevent flavor fatigue, which can be a challenge for maintaining a special diet. Did you know that you can easily switch up the flavor of your child’s KetoCal by adding sugar-free, carb-free flavorings?

There are several brands* to choose from, including DaVinci Gourmet®’s Sugar-free Syrups (which use sucralose) or SweetLeaf®’s Sweet Drops™ (which use Stevia®).   From Double Chocolate to Strawberry to Cookie Dough, there are a variety of flavors to keep meal time fun each day of the week. The flavorings can be added to KetoCal 4:1 LQ Unflavored or Vanilla (which blends nicely with other flavors).

If you have not used carb-free flavorings before, be sure to check with your health care professional to ensure that they are appropriate for your child’s diet.

How do you spice up your little one’s KetoCal?

*Please note that Nutricia is not affiliated with the flavoring brands listed above. These brand names are provided for information purposes only.

Recipe: KetoCal Pumpkin Spice Shake

yogurt with spiced pumpkin puree

In case there was any doubt, the surplus of pumpkin-flavored foods confirms that it is officially fall. Like many, I look forward to pumpkin lattes, pumpkin cheesecakes, and anything else pumpkin all year long. I decided that we needed to come up with a pumpkin KetoCal recipe, so I set out to create one. I must say that this delicious KetoCal Pumpkin Spice Shake exceeded my expectations. I hope that your keto kids enjoy it as much as I did!

-Mallory

As always, consult with your health care provider to ensure that this recipe idea is appropriate for your child’s diet and calorie requirements. The instructions for preparing this recipe at a 4:1 and 3:1 ketogenic ratio are provided, along with the instructions for preparing this recipe for the Modified Atkins Diet. Be sure to use the appropriate version for your child. If your child is on a different ratio, your dietitian may be able to help you adjust it by changing the amount of oil used. Note that the nutrition values were calculated using KetoCalculator, so if you are in another country or using a different system, the recipe may need to be adjusted.

Ingredients:

4:1 Version:

  • 120 g Vanilla KetoCal 4:1 LQ (you could also use Unflavored KetoCal LQ but you may want to add a carbohydrate-free sweetener if you do)
  • 15 g pumpkin, canned, unsweetened
  • 1 g ground cinnamon or unsweetened pumpkin pie spice
  • 5 g canola oil

3:1 Version:

  • 120 g Vanilla KetoCal 4:1 LQ (you could also use Unflavored KetoCal LQ but you may want to add a carbohydrate-free sweetener if you do)
  • 15 g pumpkin, canned, unsweetened
  • 1 g ground cinnamon or unsweetened pumpkin pie spice

MAD Version:

  • 1/2 cup (120 mL) Vanilla KetoCal 4:1 LQ (you could also use Unflavored KetoCal LQ but you may want to add a carbohydrate-free sweetener if you do)
  • 1 tablespoon pumpkin, canned, unsweetened
  • 1/2 teaspoon ground cinnamon or unsweetened pumpkin pie spice

Directions:

  • Add ingredients to a blender and blend until smooth.
  • Once prepared, serve immediately or store in a refrigerator for up to 24 hours.

Serving ideas:

  • Blend with ice for a cold treat!
  • Serve warm for a comforting treat on a cold day!
  • Freeze into pumpkin spice popsicles or ice cream!

Nutrition Information:

4:1 Version:

Ratio: 4:1
Calories: 228
Fat: 22.8 g
Protein: 3.9 g
Carbohydrate: 1.8 g

3:1 and MAD Versions:

Ratio: 3.1:1
Calories: 183
Fat: 17.8 g
Protein: 3.9 g
Carbohydrate: 1.8 g