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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 Medical Ketogenic Diet

explaining epilepsy and ketogenic diet to young childrenWhen your child has seizures and is starting a medical 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. This post provides some tips and resources to help you explain epilepsy and the medical 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 many children’s books about special diets or epilepsy. Here are some that you might find useful:

Reassure Them That They Are Not Alone

Even at an early 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 medical 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 medical ketogenic diet to your child? What advice would you give to other parents in your shoes?

The medical ketogenic diet should be used under medical supervision.

“What Are Ketones Anyways?”

When your child is on the medical 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?”

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 medical 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.

  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.