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.

Back to School Tips for Families on the Ketogenic Diet

As your children head back to school, we hope you can use these tips by ketogenic dietitian Lindsey Thompson, MS, RD, CSP, LD. Thanks, Lindsey!

Starting the new school year can be a mix of emotions from both excitement to apprehension, especially for families with a child on the ketogenic diet. Here are some tips to help get you through these upcoming weeks as school approaches.

Meet with the teacher and staff at the school

It is important, particularly if your child will be at a new school this year, to make sure all of the staff members who are in contact with your child are aware of his or her special diet and restrictions. If your child has an Individualized Education Program (IEP), you likely already have a meeting scheduled. Be sure to discuss:

  • Dietary restrictions- Many parents I have worked with find it helpful to compare the ketogenic diet to a food allergy (“my son has an allergy to carbohydrates or sugar”). Although this is an oversimplification of the diet, sometimes using the comparison helps staff understand the scope of the ketogenic diet when applied to epilepsy management.
  • Classroom items to avoid – In addition to the dietary restrictions, make sure staff are aware that classroom items containing carbohydrates could be harmful for a child on the ketogenic diet to use (for example, modeling clay/play dough, which contains flour). I tell classroom staff that when in doubt, have the child wear gloves when using a product in question.
  • Parties & Special Events – It is also important to review with the teacher the schedule of class parties or events that may contain food. Have the teacher let you know in advance when there will be a party or food so that you can send an appropriate ketogenic alternative for your child.

Ease into the school routine

Switching from the summer schedule to school schedule can be stressful. Kids with epilepsy may especially need additional time to adjust their sleep schedules in preparation for school. Practice your family’s school routine a few weeks in advance, perhaps in preparation for a day at the zoo or another activity. Set the alarms, have your children get up and ready, and pack that keto lunch for your child. You may even practice getting to the bus stop or driving to school to estimate the correct time needed. Practicing beforehand will make the first day of school go more smoothly.

Meal prep

As any keto parent knows, meal prepping for the ketogenic diet is very time consuming. Schedule a day or time to prepare ketogenic meals and snacks for school ahead of time. Many parents like to choose a day when a spouse or other caregiver is available to help keep the kids occupied, like a weekend day.

Try to keep school lunches simple. If your child likes to drink KetoCal®, your school can provide a serving of KetoCal for the same cost as a school lunch, which may save you time in having to meal prep. See this link for more information about the KetoCal and National School Lunch Program: https://www.myketocal.com/schoollunch/.

Helpful supplies for school lunches

Supplies that are helpful on the ketogenic diet lunches include:

  • An insulated lunch bag with an ice pack (to keep cream and other fats cold)
  • Small containers for holding the smaller portions of food required on the ketogenic diet
  • Some families like a bento-style lunch box and kids find that can be fun as well

Having a child on the ketogenic diet is a lot of work and preparation, but it is worth the effort. All of you keto parents and caregivers are doing great! I hope these tips will help ease you and your child on the ketogenic diet into a safe and happy school year!

-Lindsey

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

KetoCal is a trademark of SHS International LTD.

KetoCal is a medical food for use under medical supervision.

 

Tips for Caregivers of Tube-fed Children & Adults on the Ketogenic Diet

Tish and Caroline

My name is Tish and I have a 21-year-old daughter named Caroline. She has a rare neurological disorder called Alternating Hemiplegia of Childhood (AHC), and as with about 50% of kids who have AHC, she also suffers from epilepsy. Caroline has had seizures since birth, but they were pretty well controlled with medications until she hit her teenage years. About 3 years ago, she ended up in the hospital in status epilepticus for over 12 hours. After this event, we decided, with our neurologist, that it was time to try the ketogenic diet.

The ketogenic diet has been incredibly helpful for Caroline. Not only did it help with her seizures, but we noticed increased energy and overall health. Because Caroline is tube-fed, the ketogenic diet is relatively easy to do. Now that we have been doing the diet for a while, I’ve come up with some ways to make it a little easier. I hope that these tips will help make your life a little easier too!

Have Your Tools Handy

Have all the things you need to make your feeds stored in the kitchen by the sink rather than the pantry. You may be giving up valuable storage space but it will take the hassle out of mixing your feeds. I use a deep drawer just by the sink that serves as our “keto drawer”. I keep the KetoCal® 4:1 LQ, all the extra ingredients, gram scale and mixing devices right there.

Pre-make Your Feeds

KetoCal 4:1 LQ mixed in a lidded container with a pour spout

Because my daughter is older, she needs extra protein with the KetoCal®, so we add protein powder, plus MCT oil. I pre-make all my daughter’s feeds the night before and store them in containers in the refrigerator. They are safe to use for 24 hours. I put the mixture in a small lidded container with a pour spout. This makes it easy to take to school or on outings. I just shake them up before pouring them into her feeding bag. I bought the lidded containers at the grocery store. We use 3 per day and I have 6 of them so that I always have a clean set to work with.

Measure Your MCT Oil in a Glass Container

Measuring the MCT oil is a challenge for us. We use a small amount and the MCT oil is hard to clean out of most plastic measuring devices. I like to use a glass shot glass with mL and fluid ounce measurements on it. I bought it at a kitchen store but you can also find them online. (Be sure to check with your dietitian because some families may be asked to measure MCT oil with a gram scale)

Check Off All Your Daily Requirements

When I made my daughter’s feeds, I put everything she needs once daily into her morning feed. So, I put her potassium citrate, powdered multivitamin (we use Phlexy-Vits® by Nutricia) and her daily laxative dose into her morning feed. Just prior to feeding, I add them to the plastic container that I made the night before. This way I am sure she gets everything she needs for the day.

Create Instructions for Other Caregivers

I am usually the one who mixes all food and medicines for my daughter. However, in the event that a caregiver or family member does it in my absence, I have typed, laminated instructions in my “keto drawer” with all of the ingredients and equipment.

I hope that these tips are helpful. If you have a child who is tube-fed and has uncontrolled seizures, I highly recommend that you talk to your neurologist about the ketogenic diet. It has been pretty easy to manage, and for us, it has made a big difference in our daughter’s quality of life.

-Tish

*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.

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