Living with Keto for the Long Haul

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By: Laura Dority, MS, RD, LD

Reviewers: Dr. Tracy Gertler & Meredith Johnson, MS, RD, CSP, LD

Introduction

For many families, the ketogenic diet (KD) is more than a short-term intervention — it can become a long-term therapy for managing seizures when medications fall short. While its effectiveness is well established, families often wonder: Is it safe to stay on keto for years?

The truth is, misconceptions about long-term KD are common. Families may hear scary claims — from bone loss to dangerous cholesterol levels or even stunted growth. While side effects are possible, many of these risks are avoidable and preventable. Research shows that most children and adults on long-term KD can maintain stable health when the diet is closely monitored with regular labs, supplements, individualized adjustments, and guidance from a knowledgeable healthcare team.

This article explores what the research shows, where uncertainties remain, and how families can work with their healthcare teams to make long-term keto as safe and successful as possible.

Short-Term vs Long-Term Side Effects

Families often report short-term issues when starting KD, such as constipation, diarrhea, nausea, vomiting, weight changes, hunger, lethargy, hypoglycemia, dehydration, or food refusal. These are usually most noticeable early as the body adapts.

Over the long term, concerns may include slowed growth, constipation, elevated lipids, kidney stones, osteopenia, and carnitine deficiencies. Some complications — like metabolic acidosis, electrolyte imbalances, and vitamin/mineral deficiencies — can occur at any stage, making regular monitoring essential.

Insights from Healthcare Providers

In a recent survey of over 30 ketogenic diet specialists, we asked how they approach long-term KD:

·       Duration: About 43% of providers reported having patients on the KD for more than 2 years, with some patients continuing for over 20 years.

  • Conditions: Long-term use is common for GLUT1 deficiency syndrome, pyruvate dehydrogenase deficiency, mitochondrial disorders, and drug-resistant epilepsy.

  • Monitoring: Nearly all providers rely on routine labs, growth tracking, and symptom check-ins.

  • Common Adjustments: To improve sustainability, providers often lower the KD ratio, liberalize the diet (e.g., MAD or LGIT), or add MCT oil to increase flexibility while maintaining seizure control.

Clinicians emphasized that, overall, side effects on long-term ketogenic diet therapy can be managed successfully. As one provider noted, “In our experience, side effects are usually easy to manage with appropriate follow-up care.”

Another explained that while “we’ve occasionally seen vitamin deficiencies, these were mostly linked to poor supplement compliance.”

A third clinician added perspective from years of practice: “Most side effects show up within the first year. With careful supplementation and monitoring, long-term keto doesn’t necessarily get harder over time.”

What the Evidence Tells Us

A recent systematic review looked at 26 clinical trials examining the side effects of the KD in children with medication-resistant epilepsy. The researchers separated side effects into short-term (the first three months) and long-term (beyond three months).

In the early weeks, the most common challenges were digestive upset — such as constipation, diarrhea, or stomach pain — which affected nearly half of patients. About one in four experienced neurological effects like tiredness or sluggishness. Hypoglycemia was reported occasionally but was usually short-lived, while issues like acidosis and kidney stones were rare.

Over the longer term, digestive problems continued to be the most common concern. Some children experienced less lethargy but more appetite loss. Bone density changes and kidney complications were also reported in some studies.

The encouraging news is that most of these side effects are temporary or manageable and rarely lead to stopping the diet. The review also noted that using a lower fat-to-carbohydrate ratio (such as 2.5:1 instead of 4:1) may help reduce side effects, though this could lessen seizure control in some children. Overall, the findings reinforce the importance of close monitoring, personalized adjustments, and long-term follow-up to help families stay successful on KD.

Growth and Bone Health Need Attention

A 2023 study (Corsello et al.) found that the diet may slow growth and reduce bone mineral density (BMD), particularly without careful monitoring, and emphasized starting preventive micronutrient supplementation from the beginning. Similarly, a 2025 study (Bahbah et al.) of 56 children on KD for more than 2 years reported consistently lower bone density compared to healthy peers. However, outcomes were not worse than in children on anti-seizure medications alone, with ambulation and AED use proving stronger predictors of low bone density than the diet itself. Importantly, BMD reduction was seen across all groups—even with vitamin D and calcium supplementation—likely relating to less weight-bearing activity and underscoring the need for ongoing bone monitoring.

Heart Health is Usually Stable

The same Bahbah study showed that cholesterol and lipid levels often rise early on KD but typically do not result in heart disease or heart damage after 2+ years. Echocardiograms and vessel scans remained normal, and long-term KD did not increase cardiometabolic risk compared with children treated only with AEDs.

Nutrients Can Be Tricky

Research reviews show that KD can leave children short on several vitamins and minerals — particularly selenium, calcium, and B vitamins. Even with well-planned meals, these nutrients often fail to meet daily requirements without supplementation. Regular lab checks and a strong supplement plan are therefore essential parts of long-term management.

Where We Still Have Questions

  • Cognition and learning: Some studies suggest that children may experience better alertness, attention, or overall development while on KD; however, it is difficult to determine whether these effects are due to the diet itself or simply the result of reduced seizure activity.

  • Gut health: GI symptoms (constipation, reflux, abdominal pain) are among the most common side effects in both the short- and long-term studies. Research into the microbiome is still very new – while we know that it changes on the KD, it is not clear what these changes indicate.

  • Family fatigue: Perhaps the most universal challenge is not medical but emotional — the day-to-day effort of meal prep, restrictions, and long-term planning. In our provider survey, more than 60% listed “family fatigue” as their top concern.

Caregiver Takeaways

The key to long-term KD success is working closely with your healthcare team. Neurologists and dietitians can help fine-tune the diet, monitor labs, adjust medications, and address side effects before they become bigger concerns.

With their support, families can:

  • Expect most side effects in the transitional period — these often improve as the body adapts.

  • Know that digestive issues are the most common, both short- and long-term.

  • Work with their healthcare team to adjust the KD ratio while still maintaining seizure control.

  • Adhere to the supplement plan provided by your care team to help prevent deficiencies and side effects.

  • Stay on top of labs to catch nutrient or metabolic issues early.

  • Track growth and development by monitoring height, weight, and milestones.

Conclusion

The KD isn’t a quick fix — it’s a powerful long-term therapy for those living with difficult epilepsy. Research shows that while side effects like bone density loss or nutrient gaps are possible, most can be managed with proactive care. Families who partner closely with their healthcare teams can maximize the benefits of KD while supporting growth, health, and everyday life.

References:

Bahbah, W., et al. “Long-term cardiometabolic and bone health consequences of ketogenic diet in children with refractory epilepsy.” Italian Journal of Pediatrics, vol. 51,2025, p. 261.

Corsello, A., et al. “Ketogenic diet in children and adolescents: The effects on growth and nutritional status.” Pharmacological Research, vol. 191, 2023, p. 106780.

Neal, E., et al. "Cognitive Benefits of the Ketogenic Diet in Patients with Epilepsy: A Review." Epilepsy & Behavior, vol. 87, 2018, pp. 69–74.

Prudencio, M., et al. “Micronutrient supplementation needs more attention in patients with refractory epilepsy under ketogenic diet treatment.” Nutrition, vol 86,2021, p. 111158.

Pulsifer, M., et al. "Ketogenic Diet Effects on Neurobehavioral Development of Children with Intractable Epilepsy: A Prospective Study." Epilepsy & Behavior, vol.59, 2016, pp. 239–245.

Sepehrar, S., et al. “Short and long-term side effects of the Classic Ketogenic Diet in pediatric epilepsy treatment: A systematic review of clinical trials.“ Seizure: European Journal of Epilepsy, vol. 131, 2025, pp. 382-390.

Zupec-Kania, Beth & Zupanc, Mary. “Long-term management of the ketogenic diet: Seizure monitoring, nutrition, and supplementation.” Epilepsia, vol. 49, suppl 8, 2008. pp. 23-26.

Disclaimer:

This is not an exhaustive list of side effects. Each individual may respond differently to the ketogenic diet. Always consult your healthcare provider for personalized guidance.

Weaning the Ketogenic Diet: A Guide for Patients and Caregivers

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By: Laura Dority, MS, RD, LD

Edited by: Amy Merwarth, RD, LD 

Weaning off the ketogenic diet (KD) is a highly individualized process. While this guide provides general suggestions, every patient’s journey will be unique. Always consult your ketogenic diet team to create a personalized plan that fits your needs.

The ketogenic diet significantly alters metabolism, so a gradual transition is usually recommended. A slow, structured approach can help minimize side effects and ensure a smooth shift back to a balanced diet.

General Guidelines for Weaning

1. Take It Slow

The longer someone has followed the ketogenic diet, the more gradual the transition should be.

  • Short-term use (3–4 months): Can often be discontinued within 1–2 weeks.

  • Long-term use (1+ years): May require 3–6 months or longer for a safe transition.

Some families may prefer an even slower approach, which can be accommodated based on tolerance and medical guidance.

2. Adjust the Ketogenic Ratio Gradually

For those on a classic or modified ketogenic diet, which are prescribed as a ratio of fats to proteins and net carbohydrates (e.g., 4:1, 3:1, 2:1), weaning typically involves lowering this ratio step by step over time.

  • Reduce the ratio by 0.25 to 0.5 steps every 2–4 weeks.

  • Monitor for any symptoms and slow the process if needed.

A gradual reduction helps prevent electrolyte imbalances and ensure a smoother transition out of ketosis.

3. Reintroduce Carbohydrates Wisely

For individuals following a Modified Atkins Diet (MAD) or Low Glycemic Index Treatment (LGIT), reintroducing carbohydrates should be done carefully. Increasing daily carbohydrate intake by 5–10 grams per day, focusing on complex carbohydrates like whole grains, legumes, fruits, and starchy vegetables, supports a smooth transition out of ketosis. Avoid adding excessive sugars or processed foods too quickly.

4. Liberalize Food Choices

As you transition off KD, begin incorporating a wider variety of foods:

  • Swap heavy cream for whole milk.

  • Increase lean proteins (chicken, fish, tofu, eggs).

  • Introduce more vegetables and fiber-rich foods.

A gradual shift prevents digestive discomfort and helps maintain balanced nutrition.

Monitoring During Weaning

Even after reducing ketosis, it’s important to monitor for side effects like fatigue, digestive discomfort, and seizure activity. If concerns arise, consult your medical team promptly.

After Weaning: What to Expect

  • Seizure Monitoring: If seizures return, discuss treatment options with your provider.

  • Balanced Nutrition: Continue focusing on whole, unprocessed foods.

  • Medication Adjustments: If the ketogenic diet led to reduced use of seizure medications, adjustments to medication dosages may be needed during weaning.

Final Thoughts

Every patient’s weaning process is different; therefore, working closely with your ketogenic team is key. Open communication, patience, and careful monitoring will help ensure a safe and successful transition. If you have any concerns, don’t hesitate to reach out to your medical provider—you are not alone in this journey!

 

Organizing Medical Records: A Vital Piece of Caregiver Support

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Author: Jessica Lee

One crucial aspect of caregiver well-being is the importance of feeling organized and in control with the ability to easily and quickly access pertinent information about our loved ones. Since electronic medical records often do not “talk” to each other, managing medical documentation ensures continuity of care and empowers families with information that can significantly impact their loved one’s health.

Traditional Methods: Paper vs. Binders

If you are like me, you have relied on traditional methods like storing medical records on paper and organizing them in binders. This method offers a tangible, accessible format that is easy to annotate and personalize. However, it comes with its challenges. Paper records can quickly become cumbersome, filling multiple binders over time. They are also prone to wear and tear and organizing them in a meaningful way can be labor-intensive. Not to mention the lengthy post-visit process of obtaining radiology or surgical reports from the hospital. 

Embracing Digital Solutions

In recent years, the invention of digital solutions has transformed how families manage medical records. Online platforms and applications provide a streamlined approach to record-keeping. One such innovative tool that I came across is mejo® (available at mymejo.com), founded by a dad whose son has a rare genetic disorder. I decided to take a look for myself…

Benefits of mejo®

mejo® offers several advantages over traditional methods:

  • Centralized Storage: All medical records can be stored digitally in one place, eliminating the need for multiple binders and reducing clutter.

  • Accessibility: Information is available at your fingertips, anytime and anywhere with an internet connection, making it easier to share with healthcare providers, babysitters, or teachers.

  • Customization: Families can personalize their records, make notes, adding important details, and organize information in a way that suits their unique needs.

  • Sharing Capabilities: One of the standout features of mejo® is its ability to share selected information with caregivers, ensuring everyone involved in the care process is informed and updated.

Challenges and Considerations

While digital solutions like mejo® offer significant benefits, they do require upfront effort to input all information accurately. Families may need to spend time initially to ensure all medical history, treatment plans, and dietary records are uploaded correctly. However, the time saved in accessing and sharing information later can outweigh this initial investment.

I would love to see a tracking feature, especially for the epilepsy community. A section dedicated to seizure types, symptoms, frequency, and timing would be helpful. I would also like a section where pictures could be uploaded. This could be PDFs that include information on seizure emergency protocols or images from an MRI or a wound.

Making the Choice

When deciding between traditional methods and digital solutions, families need to consider their specific needs and preferences. Some may find comfort in the tangible nature of paper records despite their limitations, while others may appreciate the convenience and accessibility offered by digital platforms like mejo®.

Organizing medical records is a fundamental step for a caregiver. Whether choosing traditional paper methods or embracing digital solutions, the goal remains the same: to empower families with the tools they need to manage their loved one’s health effectively and efficiently. 

For more information on how we support families, please visit us at www.ketohope.org.

I receive no payment or other compensation for reviews of products or services.  All opinions stated are my own. 

Weathering the Storm: Ensuring Your Child's Ketogenic Diet During Inclement Weather

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Author: Laura Dority, MS, RD, LD 

Editor: Amy Merwarth, RD, LD 

As caregivers of children on a medical ketogenic diet for epilepsy, preparation is essential, especially when faced with the unpredictability of inclement weather. Power outages, hurricanes, and other natural disasters can pose significant challenges, but with careful planning, you can ensure your child's dietary needs are met without interruption.

1. Stock Up on Non-Perishable Keto-Friendly Foods

Having a supply of non-perishable, keto-friendly foods is crucial. These foods do not require refrigeration and can be lifesavers during extended power outages. Review your child’s ketogenic meal options and make a list of non-perishable items that your child will eat. Then get with your ketogenic dietitian to compile a handful of meal options using these non-perishable options. 

Here are some examples of non-perishable food options that can work in a ketogenic diet: 

  • Nuts and Seeds: Almonds, walnuts, macadamia nuts, chia seeds, and flaxseeds are excellent sources of fats and can be easily stored.

  • Nut Butters: Almond butter, peanut butter, and other nut butters (without added sugar) are convenient, nutrient-dense, and shelf-stable.

  • Canned Meats and Fish: Canned salmon, sardines, tuna, and chicken provide protein and healthy fats.

  • Olives: These can be included as high-fat snacks that require no refrigeration.

  • Coconut Milk and Cream: Full-fat coconut milk or cream can be used in place of dairy and provides a good source of fat.

  • Shelf-Stable Cheeses: Hard cheeses like Parmesan can last longer without refrigeration. Consider cheese crisps or shelf-stable cheese snacks as well.

  • Oils (olive, avocado, coconut): Great options to get the necessary extra fat needed to stay in ketosis and can be used in place of butter in most meals. 

  • Dehydrated or Freeze-Dried Vegetables: These can be rehydrated and used in meals.

  • Pork Rinds & Low-Carb Jerky: These are excellent snacks that can fit perfectly into a keto diet. Aim for products with no added sugars and preservatives.

  • Medical Ketogenic Formula: Even if your child does not rely on ketogenic medical formula on a regular basis, consider having a small supply on hand for inclement weather situations. These medical formulas can provide your child with all of their nutrition needs in a shelf-stable product. 

2. Maintain an Adequate Supply of Medical Formula

For many children on the ketogenic diet, medical formulas are a vital part of their nutrition. Ensure you have a sufficient supply to last through potential disruptions by regularly checking your inventory and reordering before you run low, especially during seasons of inclement weather. Talk to your supplier about the process for emergency ordering due to weather and delivery timelines. Store the formula properly by keeping it in a cool, dry place, and check expiration dates regularly.

3. Plan for Power Outages

Power outages can jeopardize refrigerated and frozen keto foods. Here’s how to stay prepared if you have some warning of an impending storm (such as a hurricane):

  • Coolers and Ice Packs: Have coolers and ice packs ready to keep perishables cold if the power goes out. Try and have several meals weighed and ready-to-go if you know your area might be impacted by a storm. 

  • Dry Ice: Consider purchasing dry ice, which can keep items frozen for a longer period.

  • Non-Electric Kitchen Tools: A manual can opener and battery-operated or hand-crank blender can be useful for preparing meals without power. A portable gas stove or grill can be used to cook or reheat foods when there’s no electricity.

4. Emergency Meal Planning

With the help of your ketogenic dietitian, develop a list of simple, keto-friendly meals that can be prepared with minimal ingredients and no cooking. Here are a few ideas:

  • Tuna Salad: Mix canned tuna with mayonnaise and serve with olives.

  • Nut Butter with Dark Chocolate: Spread nut butter on a piece of dark chocolate for a quick snack.

  • Avocado & Salt: Slice an avocado and sprinkle with salt for a nutritious and easy option.

  • Salmon & Avocado: Canned salmon mixed with avocado (shelf-stable if uncut) and a handful of nuts.

  • Sardines & Olives: Sardines with olives, drizzled with olive oil, and a side of pickles.

5. Medication & Supply Management

Ensure all medications are filled and up-to-date. In an emergency, access to pharmacies may be limited, so having a sufficient supply is critical. For those kiddos on g-tubes and fed through a pump, consider having gravity bags and/or 60 cc syringes so that you can still provide formula without the necessary power a pump requires. Also, be sure to have an adequate supply of glucose or ketone monitoring devices and supplies if these are a part of your ketogenic monitoring plan. 

6. Hydration & Electrolytes

Maintaining proper hydration and electrolyte balance is crucial, especially during stressful situations. Stock up on:

  • Water: Be sure to have an ample supply of bottled water for hydration and medication administration. 

  • Electrolyte Supplements: Powdered or tablet forms are convenient and can help you stay hydrated. Check with your ketogenic diet team on best electrolyte supplements for your unique needs. 

  • Broth or Bouillon Cubes: These are great for maintaining sodium levels and can be made into a quick drink.

7. Create a Disaster Kit

Assemble a disaster kit that includes:

  • First Aid Supplies: Basic first aid materials and any specific items related to your child's condition.

  • Flashlights and Batteries: To navigate in the dark and prepare meals using your gram scale. 

  • Contact Information: Keep a list of essential contacts, including your healthcare provider and dietitian.

By preparing thoroughly, you can help ensure your child's ketogenic diet remains uninterrupted during inclement weather, reducing the risk of seizures and maintaining their health. Stay safe and proactive, and always reach out to your healthcare team with any concerns or questions.

Remember, preparation is key to navigating any storm successfully. Stay safe and take care!

Empowering Lives: Keto Hope’s Commitment to Quality Education in 2024

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By: Laura Dority, MS, RD, LD

As we step into the promising year of 2024, the Keto Hope Foundation is gearing up for an exciting initiative to help make it easier for clinicians to educate patients and caregivers on the ins and outs of ketogenic diet therapy for epilepsy. Focused on empowering patients and caregivers, our primary goal is to provide invaluable resources in the form of quality and user-friendly handouts. We know as clinicians you are incredibly busy and finding the time to create educational handouts for your facility or private practice can be nearly impossible. We hope our free educational materials will help lighten your load!

The Power of Knowledge

For individuals facing epilepsy, the journey can be challenging, and understanding the intricacies of dietary interventions is crucial. The Keto Hope Foundation recognizes this need and is committed to bridging the gap through carefully crafted handouts. Our mission is to empower patients and their caregivers with the information they need to be successful on the ketogenic diet.

Monthly Releases for Ongoing Support

In 2024, the Keto Hope Foundation will embark on a monthly release schedule, unveiling a series of handouts covering a variety of topics. Each handout will be curated and edited by ketogenic dietitians, ensuring accuracy, relevance, and accessibility. By adopting a systematic approach, we aim to create a comprehensive library of resources that covers various aspects of the ketogenic diet, from its basics to practical implementation. If you have handout topic ideas, please send them our way at info@ketohope.org.

Tailored Resources for Clinicians

Recognizing the critical role clinicians play in guiding patients on their ketogenic diet journey, our monthly handouts will be tailored to serve as practical tools for healthcare professionals. These resources will offer practical tips for implementation and address common challenges that may arise during the process. By arming clinicians with the right information, we hope to strengthen their ability to support and guide their patients effectively.

Patient-Centered Approach

Our commitment to quality extends beyond just accuracy; it encompasses a patient-centered approach that prioritizes the unique needs and challenges faced by individuals with epilepsy. The handouts will not only provide information but will also serve as motivational tools, fostering a sense of hope and resilience within the epilepsy community. By acknowledging the human side of healthcare, we hope to inspire individuals to embrace the ketogenic diet with confidence and optimism.

Accessible and User-Friendly

Understanding the diverse audience we aim to reach, the handouts will be crafted with simplicity and user-friendliness in mind. Complex scientific concepts will be presented in a digestible manner, ensuring that all patients/caregivers can benefit from the resources. Our commitment to accessibility also extends to multiple formats, making the handouts available in print and digital forms for easy dissemination.

As we embark on this transformative journey in 2024, the Keto Hope Foundation invites you to join us in the pursuit of knowledge, empowerment, and improved outcomes for individuals facing epilepsy. Through our monthly handouts, we aspire to create a ripple effect of positive change, ultimately fostering a community where the ketogenic diet becomes an accessible and well-understood option for epilepsy management. Together, let's turn hope into reality. Head on over to our handout page and check out our first release, Ketogenic Resources, which provides a list of books, recipe websites, blogs, and social media influencers to help support you on your journey!

Sick Day Survival Guide: Keto Hacks for a Safer Illness

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By: Taylor Parrish, RDN, LD & Laura Dority, MS, RD, LD

We made it…. the kiddos are back in the school routine and life is feeling a bit more organized…manageable even! That is until the first illness hits! Unfortunately, illness is inevitable regardless of diagnosis. Being sick while on a ketogenic diet is sort of a double whammy! It’s important to keep in mind that illness can lower the threshold for seizures so you may see that your child has more seizures during a period of illness – regardless of ketone and glucose levels and maintenance of a ketogenic diet.  

It is still very important to have a game plan before your child becomes ill so that you are prepared to maintain ketosis and most importantly hydration until your little keto hero is back to his/her healthy self. Now before you read on for some illness tips, please do not take the information in this blog as medical advice. This blog is just a place to get started for sick day guidance. All specific advice for your keto superstar needs to come from your keto team! 

What Can I Do Before My Child Is Sick? 

This is the most important aspect of a sick day…planning! Make sure you have the resources at your disposal when you need them. 

  • Ask your keto team for your child’s unique sick day plan that should include the following: 

    • Hydration Goals & Appropriate Use of Electrolyte Liquids such as Pedialyte 

    • Ketone Goals

    • Glucose Goals (if measured) 

    • Easy to Tolerate Keto Meals (oral eaters) 

    • Half Strength Tube Feeding Recipe (if applicable)  

What Can I Do When My Child Is Sick? 

  • Check ketones and make note of any changes from non-sick days 

  • Track seizures 

  • Focus on hydration. When your child is having diarrhea or vomiting, they are losing important fluids. Dehydration can occur more quickly in the keto population. 

    • Encourage fluid intake and offer fluids frequently. 

    • Encourage calorie-free, caffeine-free fluids.

    • Monitor signs of dehydration closely such as decreased urine output, fewer wet diapers, dry mouth/cracked lips, or lack of tear production when crying.  

    • Follow your keto team’s guidelines on fluid goals and when electrolyte solutions or liquids may be needed. Keep in mind it’s about keeping glucose levels stable during times of poor oral intake, vomiting, diarrhea, and/or tube-feeding intolerance. You don’t want to go overboard with glucose-containing electrolyte solutions such as regular Pedialyte. Something like Pedialyte Zero Sugar may be a better choice for short periods of illness while regular Pedialyte may be appropriate for longer periods of illness. 

  • Choose tablets & capsules for any necessary medications to eliminate unnecessary carbohydrate content. Check with your pediatrician and/or pharmacist for appropriate dosing. If a liquid or chewable medication is recommended or prescribed by your pediatrician, be sure to check with your keto team to see if it’s appropriate. Keep in mind that sugar-free does not necessarily mean carbohydrate-free. A must-have resource for low-carb/carb-free medications is the Charlie Foundation for Ketogenic Therapies No and Low Carb Personal Care Products Guide. 

What Can I Expect When My Child Is Sick? 

Due to the body’s natural response when fighting an illness, it is not unusual to experience a drop in ketosis before and during illness. When we are ill, the nervous system activates a stress response. Stress hormones are released – including cortisol which promotes the formation of glucose in turn increasing blood glucose levels and lowering ketone levels. Keep in mind (and remind your pediatrician) that normal glucose levels on ketogenic diet therapy are generally 50-70 mg/dL. 

On the other hand, ketones may also increase due to dehydration during times of illness. Hydration is the number one goal to focus on during illness. 

Due to the fluctuating ketone and glucose levels, seizure control may be impacted. Unfortunately, in most cases of illness, you may only have minimal control over ketone and glucose levels due to the body’s normal response. Try to avoid chasing ketone levels as this will likely lead to frustration without benefit. Keep your focus on hydration and helping your kiddo overcome illness versus obsessing over ketone levels. 

If your kiddo is not having any vomiting or diarrhea but struggling with some early satiety or decreased oral intake, consider offering meals where every bite is at the goal ratio. That way it’s not as important (short-term) if they finish the whole meal. 

How Do I Manage Vomiting & Diarrhea? 

When your child is sick and has vomiting and diarrhea, you may notice an increase in ketones due to dehydration and inadequate intake. You may also notice more lethargy and fatigue. If your child is not eating, it is important to keep your child well-hydrated. 

Know your child’s fluid goal and offer your child clear liquids every hour. Clear liquids such as water, broth, electrolyte beverages, ice chips, Pedialyte Zero Sugar, Propel, Powerade Zero, and sugar-free gelatin all count as fluids and are great focal points for the first 24 hours of illness. Of note, your keto team may advise you to dilute some of these items such as Pedialyte, Propel, and/or Powerade Zero with additional water. 

If tolerating fluids and vomiting/diarrhea has improved, start with ½ of a keto meal without the added fat (butter/oil) then advance to the ½ meal with the fat included, and finally back to goal meals as able.  If your kiddo is struggling with getting back to goal keto meals, try baked chicken and soft, cooked vegetables without the fat source (or a reduced amount of fat). Cauliflower rice with chicken and a little butter is a great option. This is also where chicken or vegetable broth can be well-tolerated. 

For those on a tube feeding once fluids are tolerated, start with ½ strength ketogenic formula and advance back to your goal as able. 

Most of the time both oral and tube-fed children can be back to their goal keto plans within 2-3 days. Keep in mind that appetite recovery can take longer. When you think about an individual who is not on a ketogenic diet, we expect a decreased appetite during illness. Keto kids are no different! So, it’s okay if you work back up to goal calories slowly, but symptoms of vomiting and diarrhea should not be persistent. If your child is unable to advance to ½ strength formula or meals after clear liquids for 24 hours, call your medical team. 

What Are Some Tips for Combating Nausea? 

  • Offer smaller more frequent meals. Not eating anything can often worsen nausea. Even just sipping on broth can help settle the stomach. 

  • Try carb-free herbal teas such as mint or ginger 

  • Reintroduce foods starting with broths, chilled avocado with olive oil, plain scrambled eggs, keto crackers (such as these flax-hemp crackers from the Charlie Foundation), nuts or nut butters, chia seed pudding, or flaxseed porridge  

  • Stick to cool/cold or room temperature foods 

  • Foods with less or no odor may be better tolerated

  • Try carb-free, carbonated beverages such as diet ginger ale 

  • If MCT oil is part of your plan, titrate up slowly (even start at 5 mL every other meal) because small volumes have less of a chance to adversely affect nausea. 

How Long Should I Let My Child Have Vomiting or Diarrhea Before Telling Someone?

Let your keto team know anytime your keto superstar is vomiting or having diarrhea. They should know on day 1 to best guide on preventing dehydration and maintaining ketosis versus reacting to treatment of dehydration. 

What Are Symptoms of Illness That Are Alarming? 

If your child experiences any indications of excessive ketosis such as the combination of flushed cheeks, increased work of breathing, increased heart rate, vomiting, lethargy, and/or a decreased appetite you should notify a healthcare provider.  When these symptoms present together, an ER visit for hydration and monitoring may be necessary. Staying hydrated is your best defense against excessive ketosis. 

What Will Happen If We Are Admitted to the Hospital Due to Illness? 

If you are admitted to the hospital due to illness, plan to bring at least a day’s worth of keto food/formula (longer if admitted on the weekend) to the hospital already prepared. Hospital cafeteria hours vary, and food service staff may not have all the necessary food needed for an unplanned hospital admission. This is particularly true if you are admitted in the evening or weekend. 

If you are at the hospital facility that is the same as your keto team, your keto RD will likely follow your admission closely and provide the medical team with guidance on oral hydration, IV fluid, lab work, and advancement of diet. If you are at a hospital facility that does not have a specific keto program, ask the local team to contact your keto team for guidance. 

Always remind the medical team that your child is on a ketogenic diet and should not have any liquid medications unless discussed with your keto team. In addition, in settings like the ER or other areas of the hospital that may not be as familiar with ketogenic diet therapy, gently remind them that IV fluid (if needed) should not contain dextrose or at most be a dextrose 2.5% solution to prevent a rapid rise in glucose. The standard dextrose solution in any hospital is 5% dextrose which is generally not compatible with a ketogenic diet. 

Glucose levels may be checked during a hospital admission. Keep in mind that normal glucose for a ketogenic diet is 50-70 mg/dL – For those kiddos not on a ketogenic diet generally glucose goals are >70 mg/dL so there is a difference here. The medical team may need reminding that slightly lower glucose levels are expected for ketogenic diet therapy but again – too low of glucose levels (<40 or 50 mg/dL depending on your keto goals) can happen during illness and should be treated.

Final Advice….

Unfortunately, keto superstars are not immune from getting sick…it’s bound to happen! Remember to stay calm, call your keto team to give them a heads up that your little one is feeling under the weather, reference your sick day plan frequently, focus on hydration, and most importantly give your little one some extra snuggles until they feel back to their amazing self! 

References: 

Disclaimer: 

The advice mentioned in this article is not medical advice and should not be taken as medical advice. You should always check with your medical provider if your child is experiencing any form of illness.   


Epilepsy-Related Reading List

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By: Laura Dority MS, RD, LD & Daisy Argudin (parent advocate)

Epilepsy is hard… it’s hard for everyone… siblings, parents, grandparents, friends, and especially the kiddo with seizures. Epilepsy is complicated… there isn’t just one cure… one medication that works for one person doesn’t work for another…there are numerous different kinds of seizures and epilepsy syndromes. 

Epilepsy is not easy to explain… especially to younger children, so we compiled a list of books to help! 

Keto-Related

Krazy for Keto by Brandon Kopp (2023) 

The story of a young boy's successful journey on the medically prescribed Ketogenic Diet for Epilepsy. Based on the real-life experience of the author. 

After traditional medications failed to control his seizures, Brandon was admitted to the hospital where he initiated the Ketogenic Diet for Epilepsy in hopes of finding some seizure control. 

Brandon bravely learns how to acclimate to his new life on this restrictive diet while still attending school and socializing with other children. 

While not specific to keto, Gordy and the Magic Diet by Kim Diersen is a good option for children following any type of medically restricted diet. Unfortunately it is difficult to find but you may be able to find a copy at your local library or a used bookstore. Based on this list, it looks like the world could use more keto-specific books for children…..are you up for the challenge? 

For the next section of this blog, we have divided the list into a few subcategories:

  • Epilepsy-Related (for the patient) 

  • Epilepsy-Related (for friends and peers) 

  • Epilepsy-Related (for siblings) 

These books will help support your kiddo with epilepsy by giving them understanding and courage on their epilepsy journey. 

The Adventures of Buzz Bee by Jacqueline Ann Gibson (2015)

  • Buzz Bee has been feeling strange lately. He's been flying into flowers, falling over in the hive, and the worst thing of all: he has no idea why. After a visit to Dr. Glowden, Buzz Bee and his mommy finally find out what's going on - Buzz Bee has been having seizures. 

  • If your child is suffering from epilepsy, or has someone in their life with the condition, this book is a fantastic way to teach them about the disorder and how it's treated. 

  • It also reminds readers that those who suffer from epilepsy or any other disorder are just as normal as any other bee in the hive. 

The True Life Adventures of Spunky Monkey, The Magical Poodle by Lauren Michell Ruehring (2012)

  • Spunky Monkey The Magical Poodle is a dog with epilepsy who wanders off while at the park with his family and em"barks" on a day-long journey of self discovery. 

  • As he tries to find food, friends and medicine, he encounters a cast of funny, caring, helpful friends who give him hope, confidence and courage to find his way home. 

  • The True Life Adventures series uses real-life dogs to explore the issues of illness, disability and other life lessons from a gentle, entertaining and uplifting perspective that all children can relate to.

The Great Katie Kate Explains Epilepsy by M. Maitland DeLand (2014)

  • Jimmy and the other young patients in the neurologist's office get     a visit from the Great Katie Kate, a spunky redheaded superhero who appears when kids get worried. Katie Kate takes the children on a medical adventure to learn about the various forms of epileptic seizures and treatments.

  • This superhero saga provides an entertaining and indispensable tool for parents and medical professionals who are seeking a positive way to help young epilepsy patients understand their condition and deal with their fears. 

I Have Epilepsy. It Doesn’t Have Me by Jamie Bacigalupo and Judy Bacigalupo (2012)

  • Follow eight year old Jamie on her journey from being diagnosed with Benign Rolandic Epilepsy at age five. 

  • Jamie persevered and overcame her epilepsy and went on to help other children by starting her own non-profit that provides gifts to children in over five states.

Mommy, I Feel Funny! A Child’s Experience with Epilepsy by Danielle M. Rocheford (2009)

  • Based on a true story, Mommy, I Feel Funny! introduces the reader to Nel, a little girl who is diagnosed with epilepsy. 

  • The story takes you through the days following Nels first seizure. Suddenly, Nel and her family are faced with thoughts, fears and emotions that come with the discovery, understanding and acceptance of epilepsy.

Let’s Learn with Teddy about Epilepsy by Dr. Yvonne Zelenka (2008)

  • A book to help children and their families identify some of the symptoms of epilepsy and understand in an illustrative and enjoyable manner the doctor's visit. 

  • The book tells the story of a young boy first diagnosed with epilepsy, the doctor's visit, the different tests and possible treatment and his relationship with his parents and friends.

And Down Went Poss & Poss’s School Days Book by Anne Little

  • And Down Went Poss is a book that examines the feelings of a baby possum when he is first diagnosed with epilepsy. Little Poss feels sad and unhappy, but with help from a special friend, he comes to realise that we are all different and that life can still be full of fun. 

  • Poss’s School Days Book is the sequel to And Down Went Poss. It looks at what happens when Poss has a seizure one day at school. 

  • These books include ideas for activities which enhance the child’s understanding of the story.

Going to school and making new friends when you have epilepsy can be scary and intimidating.  Your kiddo might be concerned with fitting in. Other children’s exposure to epilepsy and therefore knowledge may be limited and incorrect. These books are great options for the classroom and friend groups to help support inclusivity and understanding. 

Did You Know That I Have Epilepsy? by Stacey Crouch (2020)

  • A true story of a boy named Cody, who has been diagnosed with epilepsy. 

  • It was written to help kids learn more about seizures and what could happen from a child’s perspective. 

  • It’s easy for children to understand and has colorful, engaging pictures.

Milo’s Day At School by Shawnee Walker (2020)

  • This book shares a heartwarming, informative story about a child who has a seizure at school.

  • The author informs young readers about epilepsy, and what to do if they see someone have a seizure in a kid-friendly language. 

Zeeba and the Seizure by Michaela Barnes (2020) 

  • A children's book that promotes seizure and epilepsy awareness. 

  • Zeeba Zebra planned to have a regular school day but began feeling unwell. Something unusual and scary happens that leads to an unexpected field trip to the hospital. 

  • A story that encourages children to embrace empathy, friendship, and courage.

Andie and the Storm by Lexie Griffiths (2021) 

  • Simplistic for young children to learn about seizures and how to help

  • Rhyming makes it fun to read aloud as a family, class, or as friends

  • Written and illustrated by a mom with first-hand experience and knows how difficult it can be to explain seizures to children

Taking Seizure Disorders to School: A Story About Epilepsy (Special Kids in School) by Kim Gosselin (2001)

  • This story dispels the myths and fears surrounding epilepsy in a positive, upbeat and entertaining style while explaining seizures in an understandable fashion.

Is Epilepsy Contagious? by Julie Devinsky (2011)

  • This book brings the story of epilepsy alive with easy-to-understand text and illustrations that are both informative and interesting for many questions kids ask about epilepsy. 

I Know Someone with Epilepsy (Understanding Health Issues) by Vic Parker (2011)

  • This book introduces readers to what epilepsy and other seizure disorders are, how they affect people, and what they can do to be a good friend to someone living with epilepsy.

Can I tell you about epilepsy? A guide for friends, family and professionals by Kate Lambert (2012)

  • Ellie, a young girl with epilepsy, invites readers to learn about epilepsy from her perspective. 

  • Ellie helps children to understand the obstacles that she faces by telling them what it feels like to have epilepsy, how it affects her physically and emotionally, how epilepsy can be treated and how the condition is often misunderstood. 

  • Ideal introduction for children, parents, friends, and professionals to make sense of the condition in its varying forms and will be an excellent starting point for family and classroom discussions.

We know it can be hard for siblings to have a brother or sister with epilepsy or any kind of special health care need. They may feel left out, scared, or even helpless to help their sister or brother. This list will help normalize their emotions and give ideas on how they can be brave and courageous for their sibling with epilepsy. 

Becky the Brave: A Story about Epilepsy by Laura Lears (2002) 

  • This story dispels the myths and fears surrounding epilepsy in a positive, upbeat and entertaining style while explaining seizures in an understandable fashion.

  • A story about a young girl's struggles with epilepsy. Becky is always helping her younger sister, Sarah. Sarah looks up to her brave older sister - until one afternoon when Becky suffers a serious seizure. When Becky recovers, she retreats into herself and refuses to return to school, anxious that her condition not be revealed to her new classmates. It is now Sarah's turn to be brave for her sister.

If you come across any other books that you think should be included, please leave us a comment and let us know!

Note: Only books that were available on Amazon as of 4/2023 were included on this list.

Managing Ketosis: The Ins and Outs of Keeping Ketosis Safe

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Content Contributor: Taylor Parrish, RDN, CLC, LD

Ketones, ketones, ketones…..when you or your child are on a ketogenic diet it may feel like ketones are running your life! Your doctor asks your ketone level, your dietitian asks your ketone level, and you are likely tracking your ketone levels at home but what is all this business about ketones really about? Let’s take a deep dive into what factors impact ketones and why you may notice your ketone levels vary! 

What factors can lower your ketone level?  

  • Illness & Stress: Sickness (without vomiting and diarrhea) may lead to a decrease in ketone levels. Additionally, stress hormones (often a factor with illness) can lead to an increase in glucose levels which then can lower your ketones.  

  • Weight Gain: While normal weight gain is appropriate and necessary for children, excessive weight gain can lead to lower ketone levels. Your dietitian will keep a close eye on your child’s weight gain to make sure it’s appropriate for her/his individualized plan. 

  • Hidden Carbohydrates: Have you stopped measuring? Have you started eyeballing portions? If so, has your “eyeballing” portions gotten a bit incorrect?  Double check your portion sizes and make sure they are accurate. In addition, remember carbs can be hiding in many medications, sweeteners and herb/spice blends. 

  • New Foods: If you have added a new food into your keto plan (especially a “keto” marketed food), double check the amount of sweetener and fiber in the product. Even if it’s a keto approved sweetener or sugar alcohol, some people respond differently to these ingredients – this is why it’s important to track, especially when trying new foods, to see a response.  It is important to also note that some sweeteners can take up to 24 hours to take effect. 

  • Inadequate Carnitine: Carnitine is an important factor in fat metabolism because it helps fat get used for energy.  Ketogenic diet therapy utilizes more fat than those not on keto so the need for carnitine increases. It is common to have insufficient carnitine when on ketogenic diet therapy so be sure to keep up with your regularly scheduled lab work to get an accurate measure of your carnitine levels.   

  • Time of Day: Ketones are generally lower in the morning due to the dawn phenomenon which is when cortisol (a hormone) is released in the morning. Cortisol tells your liver to use up stored glucose (glycogen) because your body has gone more than 4-5 hours without energy (food). The pancreas then secretes insulin. Insulin can decrease ketones. In addition, as you eat fat throughout the day your ketone level generally increases.  

  • Inadequate Fat Intake: Be sure you are eating your recommended amount of fat daily. If you aren’t eating enough fat as prescribed by your keto team, you likely will have lower ketone levels. 

  • Hydration: Remember that urine ketones are hydration dependent. If you drank a much larger amount of fluids than normal, it may decrease the reading on your urine ketone strips due to your urine being more diluted.  

  • Body Care Products: Some individuals may be sensitive to carbohydrates in body care products such as lotions and shampoos.  While this may not apply to all individuals, if you are really struggling with ketosis and you’ve exhausted all other avenues, take a deep look into your body care products. The Charlie Foundation and the Keto Hope Foundation collaborate each year on the resource, “No and Low Carb Personal Care Products Guide,” which is available for download from the Charlie Foundation store for $8.99.  It can be very helpful to find products such as sunscreen, toothpaste, shampoo and lotion (to name a few) that are keto friendly.

What factors can increase your ketone level?  

  • Dehydration: Ketogenic diet therapy has a diuretic effect, so getting enough hydration is essential in maintaining a safe level of ketosis. Being in ketosis puts your body into more of an acidic state, which is why your keto team looks at your CO2 (bicarbonate) levels– a measure of acidosis. The goal is to induce ketosis but prevent excessive acidosis which can be exacerbated when we are dehydrated. 

  • Weight Loss: If you are losing weight due to inadequate calorie intake, you will start to burn your own fat stores which means higher ketones. 

  • Medium Chain Triglycerides (MCT) Oil: MCTs are easily absorbed and bypass much of the digestion process. Because of this easier digestion, MCTs provide a quick energy source for ketone production. If you want to learn more about MCT oil, check out our blog, The Adventures of MCT Oil. 

How Do I Best Manage Ketosis? 

  • Eat meals and snacks at the same time each day as prescribed by your keto team. Avoid skipping any meals/snacks. 

  • Monitor weight closely. 

  • Communicate with your keto team frequently. Keep them informed of ketone levels, glucose levels (if applicable), seizure control and your child’s behavior. 

  • Track your ketones as recommended by your keto team. Whether you are using urine or blood ketone measurements on your ketogenic journey, it’s important to track and report your levels to your keto team. They may ask you to check once a day or several times a day – everyone’s plan is different, but your keto team can use this information to tweak your ketogenic diet to obtain the best seizure control possible. 

  • Track your meals in a food tracking application such as MyFitness Pal (Note: This applies to those on a Modified Atkins Diet or Low Glycemic Index Treatment.) 

  • Stay hydrated. If you do not know your fluid goal, ask your keto team! 

  • Be aware of signs/symptoms of excessive ketosis including nausea, vomiting, rapid or shallow breathing, extreme sleepiness, and/or facial flushing in combination with high ketones. Typically, excessive ketosis cannot be identified by just ketone levels alone – it’s best to look at the big picture of symptoms alongside high ketone levels. If your child has any signs/symptoms of excessive ketosis, notify your keto team. 

Disclaimer: The advice mentioned in this article is not medical advice and should not be taken as medical advice. You should always check with your medical provider if you have any questions about your ketone level. 


Constipation and Keto for Epilepsy

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By: Sarah Metzger, MS, RD, LD, CDCES 

Never underestimate the power of a good bowel regimen. Constipation can wreak havoc in anyone’s life, and for those with epilepsy on the ketogenic diet, constipation can become the down-right enemy! For people who have neurological diseases, such as epilepsy, the connection between the brain and the gut can get disrupted. Because the brain coordinates the nerves and muscles needed to perform bowel movements, any neurological diseases or injuries can impact the signaling as well as the contraction of muscles in the colon. Constipation is a common side effect of multiple other diseases that affect the brain, such as stroke, Parkinson’s disease, spinal cord injury, and multiple sclerosis. Although there is little available data, epilepsy also correlates with higher levels of constipation (1). Some anti-seizure medications may also cause constipation, as 27% of patients from a 2021 study who were taking one or more anti-seizure medications experienced constipation. Among patients taking multiple anti-seizure medications, constipation was experienced most frequently among those taking carbamazepine, phenobarbital, and Dilantin (1).

When we add in the ketogenic diet, things start to slow down even more. Constipation is a well-known side effect of the ketogenic diet. The classic ketogenic diet has approximately 90% of its calories coming from fat. Fat moves through the body at a slower rate than other nutrients. This can be advantageous because it can keep one fuller for longer, but it also slows down digestion leading to constipation. Even the Modified Atkins ketogenic diet, which has around 60-70% of calories from fat, can cause the body’s digestion to slow down significantly too. Additionally, the ketogenic diet may be lacking in fiber due to low carbohydrates and low fruit/vegetables in the diet. However, there are some keto-friendly fiber foods, which will be discussed later in this article. 

One of the best ways to help prevent constipation is hydration, hydration, hydration - meeting or exceeding one’s fluid needs is an absolute must! Talk to your dietitian for your child’s specific fluid goals. Another way is with movement! Talk to your physical therapist for specialized movements for constipation specific to your child. Because of the addition of the ketogenic diet, medication may also be necessary to help with gut regularity especially for tube-fed patients. 

There are two main categories of medications that help constipation: the ‘Mushers’ and the ‘Pushers’. The ‘Mushers’ are a group of medications that helps draw water into the stool making it easier for stool to pass through the colon (also known as osmotic laxatives).  The most common keto-friendly "musher" is MiraLAX® (polyethylene glycol 3350) and is typically the first line of treatment.  Some side effects may include looser and/or more frequent stools. It’s a flavorless powder that can be easily added to water flushes/drinks throughout the day (2). Another ‘musher’ is Milk of Magnesia (also known as magnesium hydroxide or citrate). It also works by helping draw water into the stool. Like MiraLAX®, common side effects include looser and/or increased frequency of stools.  Lactulose is another ‘musher’ but not typically used on the ketogenic diet due to possible carbohydrate content. 

Insoluble fiber is an honorary musher as well. It acts in the digestive system by bulking and softening the stool because it is not dissolvable in fluids. Instead, insoluble fiber absorbs fluids in the gut and sticks to other waste materials to make softer stool. Fiber can be harder to consume on the ketogenic diet because most sources are high in carbohydrates. However, nuts, cauliflower, green beans, carrots, and berries can fit into the ketogenic diet. Another interesting food that contains 85-93 % insoluble fiber is chia seeds. Chia seeds also have an impressive lipid content, therefore, depending on the brand, chia seeds are ~1:1 ketogenic ratio and may fit into your child’s ketogenic diet (3). 

A subcategory of mushers could be called ‘gliders’. Gliders also help stool move through the colon by using lubrication. One commonly used ‘glider’ is mineral oil. Mineral oil helps to lubricate the stool and helps the stool retain its water content for a similar effect of making it easier to pass. Though some oil may leak out with the stools, there are not many significant side effects of mineral oil.

And now for the ‘Pushers’. This category of medications works differently and can oftentimes be the winning ticket for people who live with neurological dysfunction. Senna (Senokot®) is made from the leaf of pod of the Senna alexandrina plant. It comes in an over-the-counter medication and in some teas, such as Smooth Move® tea. It works to irritate the colon to help it contract and expel stool. Some typical side effects can be bloating, cramping or a general upset stomach (4). Glycerin and Dulcolax® (bisacodyl) suppositories are other colon stimulant options. They are both inserted into the bum to help lubricate and stimulate the colon to move. Glycerin suppositories contain purified water, sodium hydroxide, stearic acid and 90% glycerin (5). Dulcolax® has the active ingredient of bisacodyl that helps stimulate and hydrate the colon. Suppositories tend to work more quickly and are used on a shorter term vs. Miralax® or senna. Suppositories may leak out and/or may cause irritation, cramping, and bloating (6).

Always remember that adequate water intake is necessary for these medications or remedies to work properly. Talk with your doctor/dietitian about your child’s ideal fluid needs. If you are wondering about long-term side effects of these medications, please talk to your doctor as that is out of the scope of this post.  What products, supplements or nutrition changes have made a positive difference in your keto journey world?  Share here as a comment!

How and Why to Check Blood Ketones For your Child with Epilepsy

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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:

  1. 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

  2. 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!

  3. 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!

  4. 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. 

  5. 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.