Tips for Families Getting Ready to Start the Ketogenic Diet

Lindsey Thompson, MS, RD, CSP, LD

We are pleased to share today’s guest blog post written by ketogenic dietitian and Nutricia keto ambassador Lindsey Thompson, MS, RD, CSP, LD. Thanks for sharing your tips for families preparing to start the ketogenic diet, Lindsey!


The ketogenic diet is an option for managing intractable epilepsy, and it often provides a liberating alternative for families struggling with heavy medication loads, side effects and persistent seizures. I have seen hundreds of families benefit from the diet in incredible ways both in terms of seizure control and quality of life. Nonetheless, starting the ketogenic diet can be a challenging transition for families for many reasons. Some of the challenges relate to things other than the actual food being provided, such as mealtime structure or schedule, child behaviors around mealtime or medication/supplement administration. The ketogenic diet is initiated during a several day inpatient stay (or possibly a series of outpatient visits) and many of these challenges cannot be worked through in this short period of time.

In my experience having worked with the ketogenic diet for a number of years, there are a lot of areas families can be working on before they “formally” start the diet that can make the transition onto the ketogenic diet a lot easier.  Families appreciate working on these at home beforehand and come to the diet initiation much more prepared with what will be expected.

If your provider has started talking to you about the ketogenic diet or you in the process of getting scheduled to initiate, here are some tips to get your family ready:

Focus on Mealtime Structure

Once your child is on the ketogenic diet, he or she will be expected to consume all of the foods prepared for him/her at a scheduled meal or snack in order to consume his or her prescribed “ratio” of the diet. If your child is currently a “grazer” or very picky eater, this will be a difficult part of the transition. It will help to have put some structure in place before starting the ketogenic diet. Here are a few tips to implement this mealtime structure now:

  • Create a schedule of meals and snacks for your child.
  • Sit together at the table as a family for meals and snacks. Avoid allowing your child to eat on the couch, in front of a TV or “on-the-go”.
  • Avoid food battles. Provide your child with a plate of food and give him or her 20-30 minutes to finish what they would like to eat from the foods you have provided. After 20-30 minutes, remove the plate of food and end the meal/snack time.
  • Avoid offering alternatives to foods that are provided. If your child is very picky, have at least one “preferred” food available with the meal or snack, but avoid being a “short-order cook” for your child. If your child has not eaten a lot of the meal/snack at the end of the meal/snack, remind them that another meal or snack will be available at the next scheduled time. This will help your child to learn that they should eat what is available. When alternatives are provided, your child sees this as a reward for not eating the foods that have been provided and will make the picky behaviors worse.
  • Offer water between meals and snacks. Avoid offering drinks with calories such as juice or milk between meals or snacks, as these can make your child just full enough to not be interested in the foods offered for their next meal/snack.

Encourage Fluid Intake

Fluids are an extremely important part of the ketogenic diet. Consumption of adequate fluid helps protect against the possible side effects of the diet such as constipation, metabolic acidosis and kidney stones. I have found that children who consume adequate fluid have a much easier transition onto the ketogenic diet and do not suffer as many side effects of the diet later.

  • Ask your dietitian or pediatrician how much fluid your child needs each day (will be based on your child’s weight). Most of the time, our patients and families are very surprised by the amount of fluid their child needs each day and their child is getting less than what is expected.
  • Offer water frequently, and recognize that your child may need to be prompted to drink more regularly.
  • Get your child a special cup or bottle that he or she will enjoy drinking from.
  • Discontinue sugary drinks such as juice and soda as these will not be an option on the ketogenic diet.
  • If your child is struggling with water intake, introduce sugar free beverages (such as sugar free powders or drops) that will also be an option when your child is on the ketogenic diet. Dilute these with water as much as possible because they do contain small amounts of carbohydrate.

Start Brainstorming Ideas about Medication Administration

If your child is young, it is likely that his or her medicines or vitamins are currently in a liquid, chewable or gummy formulation. At the start of the ketogenic diet, these formulations will be changed to tablet or capsule forms because the liquids, chewables and gummies have too many carbohydrates (sugars) for someone on a ketogenic diet. For children who are not able to swallow tablets or capsules, their medicines must be crushed and administered. These are not very palatable and can be another challenge we would rather work through before the diet initiation.

  • If your child seems ready to learn to swallow pills, now is the time! Before the diet start, you can practice with mini candies or other tasty treats which will not be an option after diet initiation.
  • If possible, contact your epilepsy provider and have them change your child’s liquid medications to tablets/capsules so you are able to start practicing how your child will be able to consume these at home.
  • Test different foods your child will tolerate the medicine being mixed into such as yogurt, applesauce or peanut butter. Once on the ketogenic diet, your dietitian can create “medication snacks” that would include the above foods mixed with a certain amount fat (such as applesauce and oil, yogurt and sour cream or peanut butter and butter).
  • You can also try mixing the medicine into a small amount of a sugar free beverage that would be given via syringe.

Introduce Various Fats into your Child’s Diet

Once your child is on the ketogenic diet, high fat foods will comprise about 70-90% of his or her calories. It can be overwhelming for a child to be trying new foods for the first time when they are also in the hospital starting the ketogenic diet. If your child is not currently exposed to a variety of fats, give them a try now, so that you can let your dietitian know the fats your child prefers at diet start.

  • Heavy whipping cream: most children on the ketogenic diet drink heavy cream instead of milk. To get started, offer a small amount (1 oz) diluted equally with water and a drop of liquid Stevia added for sweetness. You can also mix your child’s milk with a bit of cream to start the transition.
  • Butter: melt over vegetables, meats or fruits
  • Sour Cream: offer as a dipping sauce with a pinch of dried herbs or mix into yogurt
  • Mayonnaise: make cold egg, chicken or tuna salads or use as a dipping sauce
  • Peanut butter: mix with butter and offer on fruits or vegetables
  • Vegetable oil (olive, safflower, grapeseed, or whatever oil is used in your home): can be used to cook with, mixed into any sauce (spaghetti sauce, barbeque sauce, ketchup) or atop meats, fruits and vegetables

The ketogenic diet can be a helpful and rewarding option for families struggling with seizures or other neurological disorders. Being prepared for the transition can make the diet initiation much more manageable, successful and enjoyable! I hope the above tips will be helpful in getting you ready to start. Good luck!

-Lindsey

KetoCal Supports Rare Disease Day 2015!

KetoCal is a medical food used by individuals with intractable epilepsy who are on a ketogenic diet. Within the category of intractable epilepsy, there are many different seizure disorders, many of which are rare diseases. KetoCal is also used by individuals with rare metabolic disorders that are managed with a ketogenic diet, including GLUT1 Deficiency Syndrome and Pyruvate Dehydrogenase Deficiency (PDHD). Many individuals in our KetoCal community are living with rare disease, so we wanted to take this opportunity to show our support for Rare Disease Day 2015rdd-logo

Below is a list of just some of the rare diseases within the ketogenic diet community. Please note that this list contains only the rare diseases that we are aware of from talking with caregivers and healthcare providers of individuals living with these diseases; If we are missing one that is important to you, please let us know. If you get a chance, please take a moment to click on the links to learn more about these rare conditions.

Rare Disease Day 2015 is on February 28th. To learn more about Rare Disease Day, and how to get involved, visit http://www.rarediseaseday.org/.

Rare Disease:Numbers:Learn more:
GLUT1 Deficiency SyndromeAbout 500 cases have been diagnosed worldwidehttp://www.g1dfoundation.org/
Pyruvate Dehydrogenase Deficiency (PDHD)Several hundred cases reportedhttps://www.rarediseases.org/rare-disease-information/rare-diseases/byID/413/viewFullReport
Myoclonic-Astatic Epilepsy (Doose Syndrome)Estimated 1 in 10,000http://doosesyndrome.org/
Tuberous Sclerosis ComplexEstimated 1 in 10,000http://www.tsalliance.org/pages.aspx?content=2
Rett SyndromeEstimated 1 in 10,000 females (very rare in males)https://www.rettsyndrome.org
Severe Myoclonic Epilepsy of Infancy (Dravet Syndrome)Estimated 1 in 30,000http://www.dravetfoundation.org/
Infantile Spasms (West Syndrome)Estimated 2-3.5 in 10,000http://www.infantilespasmsinfo.org/index.php
Lennox-Gaustaut SyndromeEstimated  1 in 50,000-100,000http://www.lgsfoundation.org/
Angelman SyndromeEstimated 1 in 15,000http://www.angelman.org/
Landau Kleffner SyndromeUnknownhttp://www.epilepsy.com/learn/types-epilepsy-syndromes/landau-kleffner-syndrome
Alternating Hemiplegia of ChildhoodEstimated 1 in 1,000,000http://ahckids.org/ or http://cureahc.org/

Fiber and the Ketogenic Diet for Epilepsy

By Ellen Sviland Avery, MS, RD, LD, CNSC

As many of you know, the ketogenic diet is a very high fat, moderate protein and low carbohydrate diet. Since carbohydrates are limited, this can also limit an important nutrient in the diet: fiber. In today’s KetoConnect post, registered dietitian Ellen Sviland Avery answers your questions about fiber and why it’s important for children on the ketogenic diet for epilepsy.

Why is fiber important?

Fiber is important in a healthy diet to maintain gut health.  It is recommended that children older than 2 years of age consume a minimum amount of dietary fiber equivalent to their age plus 5 grams of fiber per day. For example, a 4-year old child should consume at least 9 g of fiber per day (4+5=9). A safe range of dietary fiber intake for children is suggested to be their age plus between 5-10 grams of fiber per day. 1 Research has also shown that up to 55% of children don’t meet fiber needs with an oral diet. 2,3

How does this affect my child on the ketogenic diet?

As previously stated, fiber may be limited in the ketogenic diet. Fiber is primarily found in fruits, vegetables and grain products. Due to the low carbohydrate intake of the ketogenic diet, these foods are typically consumed in small quantities, limiting the amount of fiber consumed. Because of the lack of fiber and bulk in the diet, constipation is a common side effect. 4,5 Gastrointestinal symptoms, especially constipation, are seen in ¾ of all ketogenic diet patients.6

So how do I improve these side effects?

To help prevent or alleviate constipation with the ketogenic diet, talk to your child’s doctor or dietitian to ensure your child is receiving adequate fiber and fluid. Speak with the dietitian about foods that may be higher in fiber that will fit in your child’s ketogenic ratio. Sometimes just increasing the amount of fiber consumed by small amounts will help with constipation. If needed, the doctor or dietitian may also prescribe a fiber supplement or even a carbohydrate-free laxative. Do not give your child any laxative without first consulting with the medical team.

How can KetoCal help with fiber needs?

KetoCal 4:1 contains fiber to help meet your child’s fiber needs while on the ketogenic diet. One drink box of KetoCal 4:1 LQ contains 2.6 g fiber. The great thing about the fiber found in KetoCal is that it comes from a patented blend of six different types of fibers, rather than just one type. This helps to better resemble the blend of fiber one would get from eating a healthy diet. Talk to your dietitian to see how KetoCal fits into your child’s meal plan!

-Ellen

  1. Williams CL, Bollella M, Wynder EL. A new recommendation for dietary fiber in childhood. Pediatrics. 1995;96(5 Pt 2):985-8.
  2. Butte NF, Fox MK, Briefel RR, et al. Nutrient Intakes of US Infants, Toddlers, and Preschoolers Meet or Exceed Dietary Reference Intakes. Journal of the American Dietetic Association. 2012;110(12):S27-s37.
  3. Hampl JS, Betts NM, Benes BA. The ‘age+5′ rule: comparisons of dietary fiber intake among 4- to 10-year-old children. J Am Diet Assoc. 1998;98(12):1418-23.
  4. Dahl WJ, Niebergall EJ, Owen RJ. Implications of fiber inadequacy in the ketogenic diet: a case study. ICAN: Infant, Child, & Adolescent Nutrition. 2011;3(5):3.
  5. Kossoff EH, Zupec-Kania BA, Amark PE, et al. Optimal clinical management of children receiving the ketogenic diet: recommendations of the International Ketogenic Diet Study Group. Epilepsia. 2009;50(2):304-17.
  6. Bergqvist AG. Long-term monitoring of the ketogenic diet: Do’s and Don’ts. Epilepsy Res. 2012;100(3):261-6.

Top Five Books for Parents Learning About the Ketogenic Diet for Epilepsy

If you are considering the ketogenic diet for your child, or perhaps your child is already scheduled to begin the ketogenic diet, you are likely seeking all the information that you can find to educate and prepare yourself. Even after your child starts the ketogenic diet, you will likely continue searching for information and resources to support you in managing your child’s diet. Many parents find books to be helpful, so for today’s KetoConnect blog post, we rounded up a list of five of our favorite books for parents learning about the ketogenic diet for epilepsy.

For more resources for parents learning about the ketogenic dietfor epilepsy, check out our list of helpful YouTube videos and infographics.

ketodietsbookKetogenic Diets

This book, by the ketogenic diet team at Johns Hopkins Hospital, is a must-have for both parents and health care professionals.

The Keto Cookbookketocookbook

This ketogenic diet cookbook is co-authored by a mother of a child on the ketogenic diet and a ketogenic  dietitian. It provides a variety of tasty ketogenic recipe ideas.

Keto Kid: Helping Your Child Succeed on the Ketogenic Dietketokid

This book is written by a physician who is also the mother of a child on the ketogenic diet. It provides helpful tips for everyday management of the diet.

Fighting Back with Fatfightingback

This book is written by two mothers of children on the ketogenic diet for seizures. It provides practical tips for parents managing the Classical Ketogenic Diet or the Modified Atkins Diet.

Diet for Seizures: One Child’s Journeydietforseizures

In this book, a father tells about his daughter’s experience with the Modified Atkins Diet for epilepsy. This is a great read for parents, especially those interested in the Modified Atkins Diet.

Do you have feedback about these books or know of another useful book to add to this list? Please share in the comment section below!

No Bones About It: Questions and Answers About Nutrition, Epilepsy and Bone Health

By Ellen Sviland Avery, MS, RD, LD, CNSC

Why should I be worried about my child’s bones?

Bone health is important for men and women, children and adults. As children, it is important to get enough calcium and Vitamin D starting during infancy. Inadequate calcium and Vitamin D during childhood can affect proper bone development.

Where can I find calcium and Vitamin D in my food?

Good sources of calcium include dairy products, calcium fortified orange juice and milk substitutes, sardines, dark green leafy vegetables (kale, spinach, collard greens) and calcium fortified cereals. Good sources of Vitamin D include salmon, tuna, shrimp, egg yolks, beef liver, mushrooms and Vitamin D fortified foods. Of note, Vitamin D can also be made in the liver from sunlight!

How much calcium and Vitamin D does my child need daily?

The Recommended Dietary Allowance for calcium for children aged 1-3 years is 700 mg/day, 4-8 years is 1000 mg/day, and 9-18 years of age is 1300 mg/day. For Vitamin D, the RDA for children aged 1-18 years is 600 international units (IU) per day.

How do I know if there’s a deficiency?

If you are concerned about a deficiency, be sure to discuss it with your child’s health care provider.

What does this have to do with my child with seizures?

Many common anti-epileptic drugs (AED) can cause disturbances with Vitamin D absorption. In a recently published study, decreased bone mineral density was seen more often when a child was on more than one AED (Vestergaard 2015). As we mentioned already, Vitamin D is necessary for good bone health. It is important to talk to your physician about ensuring your child is receiving adequate Vitamin D and calcium.

Now you might ask why we are focusing on bone health and the ketogenic diet. Typically, the ketogenic diet can be low in high calcium and Vitamin D foods as many of them contain carbohydrate, which is restricted in the ketogenic diet. The effect of diet on bone health is just one of the many reasons why it is so important to use the ketogenic diet only under medical and nutritional supervision. Your physician and dietitian that are helping you to manage your child’s ketogenic diet will help to ensure they are meeting the recommended dietary allowance’s (RDA’s) for calcium and Vitamin D. Most often, they will recommend a calcium and Vitamin D supplement to make up for any gaps in the diet. They may also check blood levels to look out for deficiencies in calcium or Vitamin D.

Again, if you have any concerns about your child’s diet and bone health, be sure to discuss it with your child’s health care team.

-Ellen

1. Vestergaard P. Effects of Antiepileptic Drugs on Bone Health and Growth Potential in Children with Epilepsy. Paediatr Drugs. 2015.

Ketogenic Diet Myths and Misconceptions Series: Heart Disease

myths2

One of the most common misconceptions about the ketogenic diet for epilepsy is that it will lead to heart disease, also known as cardiovascular disease. It is true that consuming high amounts of certain types of fats (including cholesterol, saturated fats and trans fats) can lead to high levels of lipids in the blood, which may increase an individual’s risk for developing heart disease. It is also true that high lipid levels are a common side effect of the ketogenic diet. However, when the ketogenic diet is used under proper medical and nutritional supervision, lipid levels can typically be controlled.

When an individual is on a ketogenic diet for epilepsy, their health care team will regularly monitor their blood lipid levels. If high lipid levels are found, adjustments can be made to the diet in order to bring the levels down to a safe level. This is just one of the many reasons why it is so important to only do the ketogenic diet under close medical and nutritional supervision.

A 2008 study from Johns Hopkins Hospital found that about a third of children developed high lipid levels after starting the ketogenic diet[1]. Interestingly, the researchers noted that in many cases, the high lipid levels were only temporary. As the children’s bodies adjusted to the high fat diet, their blood lipid levels often normalized and returned to near pre-diet levels within 6-12 months[2].

As mentioned above, the ketogenic health care team can make certain adjustments to the diet in order to help prevent or manage high lipid levels. For one, the ketogenic dietitian can help caregivers to incorporate more healthy fats into the diet and reduce the intake of unhealthy fats. The Children’s Hospital of Philadelphia (CHOP) published a report in 2009 about six children who developed high lipid levels on the ketogenic diet[3]. The children’s caregivers were encouraged to reduce foods with high levels of saturated fat and cholesterol (such as heavy cream, butter, egg yolks, etc.) and to incorporate more healthy fats into the diet (such as vegetable oils, nuts, etc.). These simple diet adjustments led to improved lipid levels for all six of the children observed.

It’s important to note that high lipid levels may be less of a concern for children on the ketogenic diet who are tube-fed or who otherwise consume a formula-only ketogenic diet. The previously mentioned 2008 Johns Hopkins study found that children on formula-only ketogenic diet were much less likely to develop high lipid levels in comparison to children who consumed a solid food ketogenic diet. This may be because ketogenic diet formulas have relatively low levels of saturated fat (20%) in comparison to the amount of saturated fat in a typical solid-food ketogenic diet (60%).

In summary, the belief that a ketogenic diet for epilepsy will lead to heart disease is a common misconception. Although high lipid levels can increase an individual’s risk for developing heart disease, lipid levels can usually be managed with close monitoring and guidance from the ketogenic diet health care team. As always, be sure to discuss any questions or concerns with your health care provider.

 

  1. Nizamuddin, J., et al., Management and risk factors for dyslipidemia with the ketogenic diet. J Child Neurol, 2008. 23(7): p. 758-61.
  2. Kossoff, E.H., et al., Ketogenic Diets: Treatments for Epilepsies and Other Disorders. Fifth ed. 2011, New York, NY: Demos Medical Publishing.
  3. Fenton, C., C.M. Chee, and A.G.C. Bergqvist, Manipulation of Types of Fats and Cholesterol Intake Can Successfully Improve the Lipid Profile While Maintaining the Efficacy of the Ketogenic Diet. ICAN: Infant, Child, & Adolescent Nutrition, 2009. 1(6): p. 338-341.

Ketogenic Diet Infographics

Information graphics, better known as infographics, are visual representations of information. Infographics provide a quick and clear way to learn about a topic without having to read a large amount of text. They are a popular way to share information via social media.

Given the current popularity of infographics and their usefulness for sharing complex information in an easier-to-understand way, we searched the web for the best infographics about the ketogenic diet for seizures and epilepsy. Below is our list of the top five infographics that are helpful for learning about the ketogenic diet.

If you are a parent considering the ketogenic diet for your child, we hope that you find these infographics useful for learning more about how the diet works. If your child is on the ketogenic diet and you are already familiar with how it works, these may be useful for explaining the diet to friends, family, teachers, etc.

  1. Our favorite infographic about the ketogenic diet is from Lurie Children’s Hospital of Chicago. It does a great job of explaining the basics of how theketogenic diet works.

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  2. We may be biased about this infographic since it’s ours, but we think it’s useful for spreading awareness about intractable epilepsy and how theketogenic diet may help for some individuals.

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  3. This infographic from Duke Children’s Hospital provides a nice visual comparison of the percentage of fat, carbohydrate, and protein in a typical diet, classical ketogenic diet, modified Atkins diet, medium chain triglyceride (MCT) ketogenic diet, and low glycemic index treatment (LGIT).

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  4. Here is another infographic from our website, which we think is useful for explaining the difference between the classical ketogenic diet and the newer variations (modified Atkins Diet, MCT ketogenic diet, and LGIT).

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  5. Lastly, here is an infographic shared on Facebook by Gillette Children’s Hospital with holiday tips for parents of children on theketogenic diet. The winter holidays may be over, but these tips are useful for managing special occasions allyear long, such as birthday parties, Valentine’s Day, Easter, etc.
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Do you know of a helpful infographic about the ketogenic diet for epilepsy? Please share a link in the comments below!

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YouTube Videos for Parents Learning About the Ketogenic Diet for Epilepsy

ParentslaptopIf your child’s health care provider has recommended that you consider the ketogenic diet to help manage your child’s seizures, you likely have many questions. Your health care team can recommend various books and websites that provide helpful information for parents learning about the ketogenic diet for epilepsy. While these resources are valuable, sometimes the best information comes from other parents who have been in your shoes and can share their family’s experiences.

Thankfully, the Internet makes it possible for parents to share their stories with other parents anywhere in the world.  For today’s KetoConnect blog post, I’ve collected some of my favorite YouTube videos of parents sharing their family’s ketogenic diet stories. I hope that these families’ experiences will be helpful for you in learning more about life on the ketogenic diet for epilepsy.

Do you know of a helpful parent video to add to this list? Please share a link in the comment section below! And if you haven’t already, be sure to subscribe to KetoCal’s YouTube page for videos with mixing instructions, recipe demonstrations, and other helpful tips for managing the ketogenic diet for epilepsy.

-Mallory

Note: These videos were created by the YouTube users and are available for public view on YouTube.com.


Meet Monica’s Family

Monica’s older brother created this video to share his sister’s story with the ketogenic diet for epilepsy. Monica’s parents offer their invaluable tips and advice to other parents.

 


Meet Tyler’s Parents

In this video from Johns Hopkins Children’s Center, you’ll meet Tyler’s family and learn about their experience with the ketogenic diet for Infantile Spasms.

 


Meet Max’s Parents

In this video from the Mayo Clinic, Max’s parents share their story with intractable epilepsy and the ketogenic diet.

 


Meet Matthew’s Family

Emma, from the U.K., shares her family’s experience with Dravet Syndrome, intractable epilepsy, and the ketogenic diet. Her experience led her to create Matthew’s Friends Charity, whose mission is improve awareness and access to the ketogenic diet.

 


Meet Kate’s Parents

In this video from the Charlie Foundation, Kate’s mom and dad share their daughter’s experience with epilepsy and the ketogenic diet. Kate’s story is a great example of an older child for whom the ketogenic diet was helpful.

 


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Special Post for Epilepsy Awareness Month

As many of you know, November is National Epilepsy Awareness Month, so today’s KetoConnect blog post is a special Epilepsy Awareness edition. Read below for an overview of Nutricia’s Purple Day for Epilepsy Awareness and to view our new infographic to help spread awareness about epilepsy and the ketogenic diet.

Nutricia North America Purple Day for Epilepsy Awareness:

Last Friday was “Purple Day” here at Nutricia North America. The KetoCal team committed to donate $5 for every Nutricia North America employee who wore purple to work for epilepsy awareNNAPurple2014ness. It was a sea of purple in the office and our internal social media site was flooded with photos of employees across the US and Canada sporting purple. We were so impressed by everyone’s enthusiasm that we decided to double the funds raised.

Friday’s fundraiser will be used to sponsor a child to attend Camp Great Rock, a camp specifically for children and teens with epilepsy. Great Rock campers get a chance to experience the joys of summer camp in a safe environment, under the medical supervision of the Neurology team from Children’s National Medical Center, our local children’s hospital here in Washington D.C.

Epilepsy and Ketogenic Diet Awareness Infographic:

Also in recognition of National Epilepsy Awareness Month, we created this Infographic to help spread awareness about epilepsy and the ketogenic diet as an option for those with intractable seizures. Please feel free to share, pin, post, and spread the word!

How are you recognizing Epilepsy Awareness Month?

-Mallory

 

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Talking to Young Children about Epilepsy and the Ketogenic Diet

When your child has seizures and is starting a ketogenic diet, it’s important to help him or her to understand and cope as much as possible. But it can be challenging to discuss complex medical information with young children in ways that they can grasp. For today’s post, I’ll provide some tips and resources to help you explain epilepsy and the ketogenic diet to your little one.

Keep It Simple

Try to keep things as simple as possible. You want to be open and honest but too many details can be confusing and create unnecessary anxiety for a young child. Remember that you know your child best so you are the best judge of how much they can understand. It may be helpful to let your child guide the conversation. Provide basic information and encourage your child to ask questions. Let the questions guide you with how much information to provide.

Use Kid-Friendly Terms

Sometimes children need kid-friendly analogies to understand a concept. For example, you might tell your child “You’re starting a magic diet (or a superhero diet, or a princess diet) because it helps some kid’s brains to feel better so that they don’t have seizures. You won’t be able to eat some of your favorite foods for a while but we’ll make special magic (or superhero, or princess) foods just for you that are just as tasty.” Using terms like these can help you to communicate to your child that he or she will be eating different foods and that they can do it because he or she is strong like Spiderman (if interested in superheroes) or determined like Cinderella (if interested in princesses). Again, you know your child best so tailor your explanation to his or her interests.

Use Children’s Stories

Some parents find storybooks are helpful in communicating complicated information to children and fortunately, there are several children’s books about special diets or epilepsy. Here are some of my favorites.

Reassure Them That They Are Not Alone

Even at a young age, children are very sensitive to feeling different from their peers. Reassure your child that they should not be embarrassed about having seizures or eating differently. Point out that many people have health issues and that they come in many forms. Some kids have breathing problems, others have tummy troubles, and others have seizures. Similarly, many kids have conditions that require them to follow a special diet. For example, some children have food allergies that limit the types of foods that they can eat and others are on a ketogenic diet for epilepsy, which also limits the types of foods that they can eat.

For more information on talking to your child about epilepsy, check out some of these useful sites:

How did you explain epilepsy and the ketogenic diet to your child? What advice would you give to other parents in your shoes?

-Mallory

 

 

“What Are Ketones Anyways?”

When your child is on the ketogenic diet for seizures, the word “ketone” is a part of your everyday vocabulary. Not only do you talk about them, chances are that you measure them regularly as well. Despite this, you may find yourself wondering, “What are ketones anyways?” In today’s post, I’ll try to answer all of your questions about ketones.

Ketones, sometimes referred to as “ketone bodies”, are water-soluble compounds (meaning that they dissolve in water) that are produced as “byproducts” when the body burns fat for energy [1]. Normally, the body produces only small quantities of ketones but ketone production increases when the body is using fat as a primary source of fuel. This happens during starvation, when the liver burns stored body fat for energy, and on a ketogenic diet, when the liver burns large quantities of dietary fat for energy.

As the liver burns fat, ketones build up in the blood and the body is said to be in “ketosis”.  Ketones are transported from the liver through the blood to the brain, heart, and skeletal muscles where they can be used for energy[2].

Types of Ketones:

There are 3 different types of ketones: beta-hydroxybutyrate, acetoacetate, and acetone. Beta-hydroxybutyrate and acetoacetate are the most abundant ketones[3]. Acetone is produced in much smaller quantities, making up just a small proportion of the total ketone levels. While beta-hydroxybutyrate and acetoacetate are transported through the blood to provide energy to other parts of the body, acetone is not. Instead, it is exhaled through the lungs, which is why individuals on the ketogenic diet may have a characteristic smell to their breath.

Measuring Ketones:

When the body is in ketosis, ketones can be detected in the blood, urine and even in the breath.

Health care providers typically measure a patient’s ketone levels using blood or urine tests. Blood tests measure the blood levels of beta-hydroxybutyrate specifically. Urine tests, on the other hand, measure the levels of acetoacetate primarily. Although blood tests are generally viewed as more reliable measures of ketosis, urine testing is more practical for caregivers. Health care providers may use blood tests to evaluate ketone levels during diet initiation and at follow-up appointments but most families will measure ketones at home using urine test strips. Ketones can also be measured in the breath, although this is not a commonly used method [4, 5]. Breath testing of ketones specifically measures the level of acetone exhaled.

The Role of Ketones in Seizure Control

Because ketones can pass through the blood-brain-barrier, they are able to enter the brain to provide fuel[1]. There are many theories about how the ketogenic diet works to reduce seizures. One theory is that the ketones have an antiepileptic effect on the brain. However, we still don’t know exactly what role ketones play. Although ketone levels are good indicators that the body is in ketosis, the level of ketones do not always correlate with the degree of seizure control[6]. In other words, some individuals may have high levels of ketones but poor seizure control while others have low ketones but good seizure control. Because of this, some researchers believe that ketone levels may just be a sign that the body is in ketosis and that perhaps there is some other factor associated with ketosis that is responsible for the effect on seizures.

Thanks for reading today’s post on ketones. I hope that I answered your questions but if not, feel free to ask questions in the comment section below. We’ll see you next week!

-Mallory

  1. Kossoff, E.H., et al., Ketogenic Diets: Treatments for Epilepsies and Other Disorders. Fifth ed. 2011, New York, NY: Demos Medical Publishing.
  2. Nelson, D.L. and M.M. Cox, Lehninger Principles of Biochemistry. Third ed. 2000, United States of America: Worth Publishers.
  3. Qiao, Y., et al., Breath ketone testing: a new biomarker for diagnosis and therapeutic monitoring of diabetic ketosis. Biomed Res Int, 2014. 2014: p. 869186.
  4. Musa-Veloso, K., S.S. Likhodii, and S.C. Cunnane, Breath acetone is a reliable indicator of ketosis in adults consuming ketogenic meals. Am J Clin Nutr, 2002. 76(1): p. 65-70.
  5. Musa-Veloso, K., et al., Breath acetone predicts plasma ketone bodies in children with epilepsy on a ketogenic diet. Nutrition, 2006. 22(1): p. 1-8.
  6. Danial, N.N., et al., How does the ketogenic diet work? Four potential mechanisms. J Child Neurol, 2013. 28(8): p. 1027-33.

Medium Chain Triglcyerides (MCTs) and the Ketogenic Diet

coconutoilIf you are new to the ketogenic diet, you may be wondering about the term “MCT” you keep hearing about. MCT stands for medium chain triglyceride. Some of you may already be using MCTs, but perhaps you are wondering what makes them different from regular fats and oils. In today’s post, we’ll teach you all about MCTs, what makes them unique, and how they are sometimes used with the ketogenic diet for epilepsy.

Dietary Fat

To understand MCTs, it helps to know a little about dietary fat in general.  Dietary fat is made up of fatty acids, often referred to as the “building blocks” of fat. Fatty acids can classified as short, medium, or long-chain, depending on their length.

Most of the fat in the foods we eat is in the form of triglycerides, which are made up of 3 fatty acids. A triglyceride can be classified as short, medium, or long-chain depending on the length of the fatty acids that it contains. A long chain triglyceride (LCT) contains 3 long chain fatty acids, a medium chain triglyceride (MCT) contains 3 medium chain fatty acids and a short chain triglyceride (SCT) contains 3 short chain fatty acids.

How the Body Processes MCTs

Now that you understand the structure of dietary fat, let’s move on to the differences in how the body processes MCTs in comparison to LCTs.

  1. Digestion & Absorption: Because of their shorter length, MCTs are more easily digested and absorbed in the gastrointestinal tract than LCTs.
  2. Transportation: Once dietary fat is absorbed by the gastrointestinal tract, the body must then transport it to the liver where it is metabolized to produce energy. MCTs are transported directly from the gastrointestinal tract through the bloodstream to the liver.  In comparison, LCTs must take a longer route through the lymphatic system then through the circulatory system before finally reaching the the liver. The analogy I like to use is that LCTs and MCTs have the same origin (GI tract) and destination (liver) but LCTs take the longer, slower scenic route and MCTs take the expressway.
  3. Metabolism: In addition to the differences described above, the metabolism of MCTs is unique as well. Fat metabolism occurs in the mitochondria of the liver. LCTs require a substance called carnitine to enter the mitochondria, however MCTs can enter mitochondria freely so they are not limited by the presence of carnitine.

How Is MCT Used with the Ketogenic Diet?Liquigen

Remember that the ketogenic diet works by switching the body’s metabolism from using glucose for energy to using fat for energy, which produces high amounts of ketones in the body. The unique features of MCTs make it useful with the ketogenic diet because MCTs are capable of producing more ketones than regular fat (which is mostly LCT). Although a small number of foods contain a percentage of MCTs (such as coconut oil, palm kernel oil, and butter fat), pure MCT oil is not found naturally. However, there are specially-produced MCT oils available, such as Liquigen®.

The MCT Ketogenic Diet (MCTKD) was first introduced in the 1970s. This diet is a variation of the Classical Ketogenic Diet and is based on the percentage of calories coming from MCTs (usually between 30-60%), rather than a ketogenic ratio. The idea is that because MCTs produce more ketones than regular fat (which consists of mostly LCTs), incorporating high amounts of MCTs into the diet allows patients to stay in ketosis while consuming relatively higher amounts of protein and carbohydrates. This makes the MCTKD appealing to individuals who might have trouble complying with the protein and carbohydrate restrictions of the Classical Ketogenic Diet.

High amounts of MCTs can cause gastrointestinal disturbances in some individuals, such as vomiting or diarrhea, so the amount of MCTs that can be used depends on each patient’s tolerance. When used, the ketogenic dietitian will usually recommend introducing MCT oil gradually to help ensure tolerance. Like the Classical Ketogenic Diet, the MCTKD is initiated in the hospital under medical supervision and all foods must be weighed using a gram scale.

The MCTKD is frequently used in Europe and Canada. Although the MCTKD is less common in the U.S., MCT oil is often incorporated into the Classical Ketogenic Diet and Modified Atkins Diet. MCT oil may be added to the diet to help boost ketone production or to help maintain ketosis with a lower ketogenic ratio with more protein and carbohydrates allowed.

As always, consult with your health care provider before introducing MCT oil or any other new item into your child’s ketogenic diet.

Do you use MCTs? If so, how do you use them?

-Mallory

 

 

Photo attribution: Flickr user Mattie Hagedorn

The Modified Atkins Diet for Epilepsy

The Modified Atkins Diet: What is it, How does it compare to the classical ketogenic diet and when is it used

Since the Classical Ketogenic Diet was developed in the 1920’s, several variations have emerged, including the Modified Atkins Diet. If you are considering the ketogenic diet for epilepsy management for your child or yourself, you may have come across the “Modified Atkins Diet” and wondered what it is and how it’s different from the Classical Ketogenic Diet. In today’s blog post, KetoCal Medical Advisor and registered dietitian Ellen Sviland-Avery will explain.
ketochart3

Comparison of the Classical Ketogenic Diet, Modified Atkins Diet, and other variations

The Modified Atkins Diet (MAD) is a less-restrictive variation of the Classical Ketogenic Diet. Although it may not have quite the same success rates seen with the Classical Ketogenic Diet, MAD can be very helpful in managing seizures for some individuals. MAD is still a high fat/low carbohydrate diet but has some key differences from the classical diet.

Differences Between the Modified Atkins Diet and the Classical Ketogenic Diet:

  • Protein is not restricted
    The Classical Ketogenic Diet is designed to provide “adequate protein”, meaning that patients eat enough to sustain their body mass, but no extra. The Modified Atkins Diet does not restrict the amount of protein in the diet.
  • No gram scale required
    While the Classical Ketogenic Diet requires that foods be weighed on a gram scale, foods are measured using household measurements (like cups, tablespoons, etc.) on the Modified Atkins Diet.
  • Not designed according to the ketogenic ratio-
    As you may recall from our previous post on the ketogenic ratio, the Classical Ketogenic Diet is designed according to a ratio, usually 4:1 or 3:1 (grams of fat: carbohydrate + protein). The Modified Atkins Diet is not designed according to a ratio, but is simply based on limiting carbohydrates, usually to 10-20 grams/day. However, if you were to calculate the ketogenic ratio of a typical MAD, it would come out to about a 1:1 ratio.
  • Outpatient initiation
    While hospital admission is usually required when starting the Classical Ketogenic Diet, the Modified Atkins Diet is usually initiated in an outpatient setting.

Similarities Between the Modified Atkins Diet and the Classical Ketogenic Diet:

  • Carbohydrates are restricted-
    Like the Classical Ketogenic Diet, carbohydrates are restricted on the Modified Atkins Diet, usually to 10-20 grams/day. Hidden sources of carbohydrate must still be monitored to ensure that patients are not consuming more than the recommended amount. Label reading is a must for all OTC products as well. See the previous post on sources of hidden carbohydrates.
  • Fat consumption is encouraged-
    Fat consumption is encouraged on the Modified Atkins Diet. It can be difficult for patients on the MAD to get enough fat to remain in ketosis, so sometimes dietitians will recommend supplementing with KetoCal to boost daily fat intake.  A 2010 study found that consuming KetoCal daily helps to improve the efficacy of the Modified Atkins Diet.
  • Supplements are usually required-
    Although the Modified Atkins Diet is less restrictive than the Classical Ketogenic Diet, nutritional supplements are usually still required to ensure your child is meeting 100% of nutrition needs. Work with your dietitian to determine what, if any, supplements are necessary. All versions of the ketogenic diet can be deficient in vitamins and minerals, including Vitamin D, B vitamins and calcium, to name a few. This is one of many reasons why it is so important to only use the ketogenic diet and MAD under close medical supervision.

When is the Modified Atkins Diet Used?

The Modified Atkins Diet may be used to extend the use of dietary management of seizures to patients who are not candidates for the Classical Ketogenic Diet. Below are some examples of situations where the MAD might be used:

  • As a stepping stone to the Classical Ketogenic Diet-
    Families might use the Modified Atkins Diet in preparation for starting the traditional diet or as a trial to see if dietary management is likely to be helpful.
  • As a transition from the Classical Ketogenic Diet-
    Some patients may follow the Modified Atkins Diet when transitioning off of the Classical Ketogenic Diet. Some health care providers and families prefer to wean gradually from the Classical Ketogenic Diet, so they may switch to a MAD before coming off the ketogenic diet completely.
  • Families with limited time and resources-
    Some families may not be able to commit to the requirements of initiating and managing the Classical Ketogenic Diet, so the outpatient initiation and less restrictive nature of the Modified Atkins Diet may be more appropriate.
  • Older children, teenagers, and adults-
    Older children, teenagers, and adults may have trouble complying with the Classical Ketogenic Diet, so the Modified Atkins Diet may be easier for them to maintain. Also, because these patients have larger body masses, they may have trouble meeting their protein needs on the Classical Ketogenic Diet.

These are just some examples of when the Modified Atkins Diet might be used. If you are considering dietary management of epilepsy, you will work with your doctor and dietitian to determine whether the Classical Ketogenic Diet, Modified Atkins Diet, or another variation works best for you and your family.

-Ellen

The Ketogenic Ratio Explained

If your child’s physician has recommended a ketogenic diet for epilepsy management, you likely have many questions, which may have led you to this post. As you collect information online and educate yourself on the topic, you may come across the term “ketogenic ratio” and wonder what it means. I’ll try to clear things up in today’s post.

Infographic by Lurie Childrens Hospital

The classical ketogenic diet for epilepsy is designed according to a ratio. This ratio, often referred to as the “ketogenic ratio”, represents the amount of fat in the diet, in comparison to the amount of protein plus carbohydrate. If you are a visual person like me, this infographic to the right, which was created by the awesome keto team at Lurie’s Children’s Hospital, will help explain the concept better.

If the last paragraph didn’t trigger long-forgotten memories of middle-school math class, the remaining paragraphs surely will. Don’t worry if math is not your thing- the fundamentals will come back to you quickly. Many keto parents will tell you that managing their child’s ketogenic diet revealed math and cooking skills they never knew they had! Also, keep in mind that the ketogenic dietitian who you work with will very carefully design and calculate your child’s diet, helping you to manage it at every step along the way, so you are by no means on your own.

The most commonly used ketogenic ratios are 4:1 and 3:1. A 4:1 ketogenic ratio describes a ketogenic diet that is made of 4 grams of fat for every 1 gram of protein plus carbohydrate. In other words, for every 5 grams of food consumed, there are 4 grams of fat and 1 gram of protein and/or carbohydrate. Therefore, a 4:1 ketogenic diet contains 80% fat (4÷5=80%) and 20% protein plus carbohydrate (1÷5=20%). Likewise, a 3:1 ketogenic diet contains 75% fat (3÷4=75%) and 25% protein plus carbohydrate (1÷4=25%).

Notice that the ketogenic ratio compares the amount of fat, protein, and carbohydrates in grams, a measure of weight. This is because the diet is calculated in grams, since foods are measured by weight using a gram scale.

If you compared fat, protein and carbohydrates according to the number of calories provided from each (rather than the number of grams of each), the ratio would be a little different because fat provides more calories per gram than protein and carbohydrates do. Each gram of fat provides the body with 9 calories, while each gram of protein or carbohydrate provides the body with 4 calories.

For example, let’s say that you need to consume 360 calories. To provide 360 calories from protein and/or carbohydrate (which both provide 4 calories per gram), you would need to eat 90 grams of protein and/or carbohydrate (360÷4=90). However, to get the same amount of calories from fat, you would need to eat just 40 grams of fat (360÷9=40). Fat provides the same number of calories with much less mass because it is more calorically dense than protein and carbohydrates.  For this reason, ketogenic meals tend to look smaller than standard meals, even when they provide the exact same amount of calories.

If a child is on a 4:1 ketogenic ratio, 90% of the calories in their diet comes from fat. Did I lose you there? This part confused me
at first because I thought “how can it be both 80% fat and 90% fat?”. The answer is that it is 80% fat if you are measuring by weight and 90% fat if you are measuring by calories.  Remember that a 4:1 ketogenic ratio represents 4 grams of fat for every 1 gram of carbohydrate plus protein. Four grams of fat (which provides 9 calories per gram) provides a total of 36 calories (4 x 9 = 36). One gram of protein or carbohydrate (which provides 4 calories per gram) provides a total of 4 calories (1 x 4 = 4). The ratio of calories from fat to calories from protein plus carbohydrate is 36:4. This means that for every 40 calories consumed, 36 come from fat and 4 come from protein and/or carbohydrate. Thus, 90% of the calories comes from fat (36÷40=90%), and 10% comes from protein and carbohydrate (4÷40=10%). On a 3:1 ketogenic diet, about 87% of the calories comes from fat, and 13% comes from protein plus carbohydrate. For comparison’s sake, a typical American diet contains about 35% of calories from fat and about 65% from protein and carbohydrate.

3-1typical

I hope that this post helped to explain the ketogenic ratio and the basic design of the ketogenic diet, but if you have any questions or need anything clarified, please comment and we’ll do our best to help!

-Mallory