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. 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

 

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

The ketogenic diet for epilepsy should be used under medical supervision. 

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