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.

NEW KetoCal Connect Program to Support Keto Parents & Caregivers!

KetoCal_Connect_logoThe KetoCal® Team spoke with several keto parents to ask- What information and resources would have been helpful for you when your child started the ketogenic diet? Based on that feedback, we created the KetoCal Connect Program. The goal of KetoCal Connect is to help patients start and stay on the ketogenic diet successfully by providing caregivers with the information, support, and resources they need to manage the diet at home*.

There are 4 pillars of the KetoCal Connect program:

  1. Trusted products

We want you to have access to our trusted products from day 1 of your ketogenic diet journey. KetoCal has been used by healthcare providers all over the world for over 16 years. If you or your child is going to start the ketogenic diet or has recently started, ask your healthcare provider for a free sample of KetoCal or Liquigen® and a KetoCal Connect New Patient Starter Kit.

  1. Coverage & Cost Assistance

Our goal is to make sure that everyone who needs KetoCal has access to it. Our team of coverage specialists is available to help walk you through the process of getting KetoCal covered by your insurance, WIC, or Medicaid. When these are not options, the KetoCal Assistance Program (KAP) is available for qualifying families to purchase KetoCal at a discounted price.

  1. Caregiver Support

Remember, you are not alone – there’s a whole community behind you. Let us help you connect to nutrition experts and keto families just like you. Get one-on-one help with KetoCal or Liquigen questions by calling one of our Nutrition Specialists at 1-800-365-7354, Option 2. For everyday tips, check out our caregiver support blog. Visit our social media pages to stay up-to-date with KetoCal and to connect with other keto families just like you!

  1. Tasty Ketogenic Recipes

We know how important it is to find ketogenic variations of your child’s favorite foods (and that favorite foods can change overnight!). Check out our recipe database to find a variety of sweet and savory ketogenic recipe ideas that can be adapted according to your child’s specific nutritional needs.

Learn more about the KetoCal Connect program and get support at your fingertips by visiting www.MyKetoCal.com/KetoCalConnect.

*Please note, KetoCal must be used under the supervision of a healthcare provider. KetoCal Connect was created to help support caregivers and is not intended to replace the supervision and guidance of a medical professional.

-Mallory Eastman
The KetoCal Team
Nutricia North America

Celebrating “Thanks-Keto-Giving”

Today’s guest blog post is by ketogenic dietitian and Nutricia Keto Ambassador Vanessa Aldaz, MPH, RD, CDE. Vanessa provides her tips and recipes ideas for families celebrating Thanksgiving on the ketogenic diet.


The holiday season is around the corner. Thanksgiving may have a different meaning for each household and how we choose to celebrate it may vary from home to home. However, I believe

thanksgiving 2that one thing most people can agree on is that it is centered around coming together with family, loved ones and friends. Here are some ideas for your keto family to consider when celebrating “Thanks-keto-giving” this year (aka: thanksgiving with a keto twist).

Keto-friendly Recipes:

The following are a few good recipe ideas for you to try. Don’t get overwhelmed with the options or feel that you need to make them all. Two sides and 1 dessert can easily make your keto-child or keto- friends feel included and very “keto-thankful”.

Main Dishes

Choose from an array of protein choices: These main dishes are perfect as most of them are carbohydrate-free.

  • Roasted turkey (not stuffed)- Instead of traditional stuffing, you can stuff with herbs and citrus rinds to give your turkey flavor and holiday flair
  • A “Turducken” (duck stuffed with a chicken stuffed inside a turkey)
  • Roasted whole ham leg or a spiraled ham (without the brown sugar glaze)
  • Non-traditional main dishes such as salmon, lobster or filet mignon

Side Dishes

  • Instead of mashed potatoes, try mashed cauliflower drizzled with good quality butter or try KetoCal® Mashed Fauxtatoes (4:1 recipe, 3:1 recipe)
  • Try the KetoCal Cauliflower and Cheese recipe- sooo good! (4:1 recipe, 3:1 recipe, MAD recipe)
  • Green salads- use group A and B vegetables if you are on the Classic Ketogenic diet. Read the food label of your favorite creamy dressing and add heavy cream, mayonnaise, or oil to make it your ratio. Check your specific diet ratio and amounts with your ketogenic dietitian
    • My favorite: kale and baby spinach, cucumbers and sunflower seeds, topped with blue cheese dressing with extra heavy cream and mayonnaise.
  • KetoCal’s Thanksgiving Stuffing (4:1 recipe, 3:1 recipe)
  • KetoCal’s Green Bean Casserole Recipe (4:1 recipe, 3:1 recipe)
  • Charlie Foundation’s Chicken or turkey keto gravy (3:1 recipe)
  • Charlie Foundation’s Squash Curry Soup (if you are not a fan of curry try adding pumpkin spice instead)
  • Charlie Foundation’s High Fiber Bread Roll (4.16:1 recipe) (you can also use these high fiber rolls as a base for stuffing)

Desserts:

Family Activities

Another way to make “Thanksketogiving” a success is to try not to completely focus the day around the food. Get up and go do other fun and exciting activities to add to your memories. Depending on where you live there are many holiday activities you can participate in.

Go to the movies!

Thanksgiving weekend is a popular time for opening day of some big movies of the year. There are a variety of movies, animated and not, that feature heroes, superheroes, and other beloved characters of the season. There is something for everyone!

Take a walk!

Weather permitting, it’s nice to get outside as a family. Take a walk around the neighborhood or out to the zoo.  If you live in warmer climates, play touch football, soccer or baseball in your backyard or a nearby park.

Play games!

Get your friends and family together and play charades! Have everyone write random words, famous people, phrases or themes on pieces of paper and put them all in a jar. Make your own rules and have fun as all ages can play this game. Or, if you don’t like charades, family board games are always fun.  If relatives are coming, have them bring some of their favorites so you can all play together!

Play & sing!

If your family likes to sing or play music, consider bringing music sheets or a karaoke machine! You can always use pots, pans and plastic containers that aren’t used for the meal to make musical instruments and form your own band.

Get crafty!

Set out festive craft supplies for your little ones to create placemats, napkin rings, wreaths and centerpieces to use as your Thanksgiving Day table decorations. You can find some Thanksgiving-themed craft ideas here.

And finally, don’t forget to share with each other why you are grateful to be together or what you are thankful for. Happy Thanksgiving, everyone!

-Vanessa

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

KetoCal is a medical food and is intended for use under medical supervision. 

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

KetoCal is a trademark of SHS International LTD.