How and Why to Check Blood Ketones For your Child with Epilepsy
/By: Jessica Ernst MS, RD, CSP, LD
If your child is on a medical ketogenic diet for epilepsy, your dietitian or doctor will most often ask at appointment visits: “What are your child’s ketone levels”? Blood ketones (or beta-hydroxybutyrate) is the most abundant ketone circulating in the blood and can provide real time information on whether your child is in ketosis. When a child is on a medical ketogenic diet, ketones may provide important information regarding your child’s keto ratio in relation to seizure control.
Here are some reasons why blood ketones are important to measure:
When starting a ketogenic diet, blood ketone measurements can provide information on when your child is transitioning into ketosis.
Once on the diet:
If your child is still having seizures or an increase in seizures, the blood ketone level could provide information needed for the dietitian to adjust the diet ratio.
If your child has breakthrough seizures due to illness, which can cause ketone levels to be lower, your dietitian may temporarily increase the ratio.
It is normal for ketones to be lower in the morning, therefore if you notice that ketones are low in the morning but higher in the afternoon, your dietitian may suggest adding some MCT oil or a fat bomb to your child’s diet before bedtime.
Blood ketone levels can also tell your medical team if your child's ketone level is too high and his/her ratio needs decreased or adjusted to prevent short term and long-term side effects of excessive ketosis.
Your dietitian will provide your child’s unique blood ketone goal. And with these blood ketone numbers, your child’s medical team can determine if a change in ratio or calories in the diet is needed to achieve seizure freedom!
How to get your kid to test without a fuss?
Finger pokes for a child and the parent can be tough at first. No one likes to have a needle pierce the skin, but there are ways to improve the experience of the finger prick!
Here are some ways to make the process go more smoothly:
Be ready with all the supplies before you take the measurement so it can be quick and easy.
a. Supplies: lancet, lancing device, glucose-ketone meter, alcohol prep pad, Band-Aid, ketone strip
Test on different fingers or toes to not cause discomfort from testing in the same spot every day. If needed, you could ice the spot to numb it a bit, but most kids don’t require it to be numb. You will be surprised how tough these kids can be!
If age and developmentally appropriate, it is helpful if your child understands the importance of measuring ketones and can even make a fun game out of the poke. Teach your child that checking ketones keeps their body healthy and safe. Ketones are a superpower!
Use distraction! Blowing bubbles, giving your child a colorful Band-Aid, or offering a bright colored sticker may make the process a tad bit easier. Invite participation from your child so they can be involved in the process.
If your child expresses emotions such as fear regarding the poke, acknowledge the feelings, praise them for their bravery, and provide a non-food reward.
What do these results mean?
Monitoring blood ketones for trends can help guide your dietitian to make the best adjustment of the diet for your child. It is important to note that every child is different and may require a higher or lower goal blood ketone measurement for optimal seizure control. Speak with your child’s dietitian who can provide a ketone goal specific to your child's medical situation.
Many children on the ketogenic diet for epilepsy require a very stable ketone measurement throughout the day without fluctuations to maintain ideal seizure control. However, every child is different, which is why checking ketones at home may provide useful information for your child’s care team. Checking blood ketones at the same time each day may provide insight for consistency, so discuss the best time to check blood ketones for your child with your child’s dietitian.
With new technology, information can be shared in between appointments to the doctor or dietitian to make an informed decision regarding your child’s ketogenic diet prescription.
Where can I get more information on how to test my child’s blood ketones?
The Keto-Mojo website provides How-To videos with easy-to-follow steps on obtaining a great blood sample. The Keto-Mojo glucose-ketone meter can be synced through Bluetooth with a free app to track and monitor your child’s blood ketone levels. You can also share this information with your medical team through the MyMojoHealth platform. Knowing your child’s ketone level is a powerful tool to guide adjustments to the ketogenic diet.
The Keto-Mojo meter is not currently covered by insurance. However, in most cases, you can purchase a meter and strips using your Flexible Spending Account (FSA) or Health Savings Account (HSA). You do not need a prescription to purchase the Keto-Mojo glucose-ketone meter, but in some cases, your HSA or FSA provider may require a detailed invoice for reimbursement. You can read more information about reimbursement here.
With the right tools, like your Keto-Mojo meter, it can be easy and quick to get these measurements! Click here for a 15% off discount on your new meter!*
Jessica is a Registered Dietitian Nutritionist, specializing in using food as medicine with the ketogenic diet for children and adults with various medical conditions. In her role as Clinical Educator for Keto-Mojo, Jessica works with health care professionals to help them understand the benefits of ketogenic therapies, the value of glucose and ketone testing for monitoring and compliance, and the ways they can integrate real-time patient data using the MyMojoHealth platform to improve health outcomes for their patients.
Refer back to this blog post for more information on the differences between urine, breath and blood ketones as well as one ketogenic dietitian's opinion and perspective on when to use each method and how often to check.
*The 15% discount applies to the Promo Bundle or Basic Starter meter kits. The discount does not apply to test strips or other accessories. You will need to select “Checkout” before the discounted price will appear. The discount will not be visible if only “Add to Cart” is selected.