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Summary of the 2014 Global Symposium for Ketogenic Dietary Therapies

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We’ve just returned from Liverpool, England where we attended the 4th Global Symposium for Ketogenic Dietary Therapies for Epilepsy and Other Neurological Disorders, hosted by Matthew’s Friends. Our brains are full of new and exciting information, so for this week’s blog post, I thought I’d share an overview of the conference with you.

As mentioned, this year’s Global Symposium was held in Liverpool, UK and hosted by Matthew’s Friends. For those of you not familiar with Matthew’s Friends, it is a charity based in England dedicated to spreading awareness and providing access to the ketogenic diet. It was started by Emma Williams, mom to Matthew, whose seizures and quality of life improved on the ketogenic diet. The mission of Matthew’s Friends is very similar to that of the Charlie Foundation here in the US, and the two groups often work together (The Charlie Foundation hosted the last Global Symposium, held in Chicago in 2012).

The Global Symposium consisted of 4 days of presentations for health care professionals, followed by a family day for families of children on the ketogenic diet, some adult patients on the ketogenic diet, and some individuals who are just interested in learning more about it. There were 5 of us from the US KetoCal team who attended the symposium, in addition to our KetoCal colleagues from the UK, Germany, Netherlands, and Spain. KetoCal had a booth in the exhibitor’s hall and as always, Chef Neil wowed visitors with his KetoCal recipe creations. We were excited to see our fellow US buddies from the Glut-1 Deficiency Foundation in the booth right across from us!

Day 1:

The conference kicked off on Tuesday with a dietitian’s meeting in the morning, followed by the opening sessions for the professional program in the afternoon. After the close of the sessions, Matthew’s Friends hosted a Welcome Reception where everyone could catch up with old friends and meet new members of the global keto family.

Matthew’s Friends created awesome video overviews of each day of the conference. Here is the video of Day 1.

Day 2:

Wednesday morning covered utilization of the ketogenic diet for specific epilepsy syndromes, including Dravet Syndrome, Doose Syndrome, Infantile Spasms, Status Epilepticus, FIRES, Angelman Syndrome, and Tuberous Sclerosis. In the afternoon, we heard presentations about the possible “mechanisms of action” of the ketogenic diet (or for those of us who are not doctors, we learned a little about how and why the diet is thought to work). That evening, we got to visit the Museum of Liverpool for the poster session. This was one of my favorite parts of the conference- Researchers from all over the world displayed posters presenting their brand new research on the ketogenic diet.

Watch the Matthew’s Friends’ video summary of Day 2 here.

Day 3:

On Day 3, researchers discussed secondary effects of the ketogenic diet, such as the diet’s effects on cognition, learning, behaviors, and bone health. Dr. Kossoff, who some of you may know from the Ketogenic Diet Center at Johns Hopkins University, talked about the long term use of the ketogenic diet. Next, a group of ketogenic dietitians talked about the clinical implementation of the ketogenic diet. The afternoon sessions focused on “optimizing utilization” of the diet. The presenters talked about utilizing the diet in specific age groups, including infants and adults, and in specific situations, such as for patients in status epilepticus. Emma Williams presented on ways to better support families and prepare them for managing their child’s ketogenic diet. That night, we had the privilege of attending the Matthew’s Friends Charity 10th Anniversary Gala Dinner. We enjoyed some great food and an awesome Beatle’s cover band (when in Liverpool!).

View the video summary of Day 3 here.

Day 4:

We started Day 4 of the professional conference with presentations on using the ketogenic diet across different cultures and settings. Next, we learned about the ketogenic diet for patients with mitochondrial disease and specific metabolic conditions, including pyruvate dehydrogenase deficiency and Glut-1 Deficiency. In the afternoon sessions, we learned about research being done on the ketogenic diet for cancer, a new and exciting topic for the ketogenic diet community. We ended the day with discussions about the future of the ketogenic diet and the announcement of the 2016 Global Symposium, which will be held in Banff, Canada!

Watch the Day 4 video summary here.

Family Day:

Family Day is always my favorite part of the Global Symposium. It’s exciting to meet families and learn about their ketogenic diet stories. In the morning, presenters gave families an overview of the presentations from the professional sessions. In the afternoon, we broke up into workshops for specific areas of interest. Between sessions, Chef Neil made some amazing KetoCal recipe creations for families to try, including some popular British foods, Scotch Eggs and Yorkshire Pudding! The UK KetoCal team launched some new KetoCal recipe books. There’s one for a 4:1 ratio, 3:1 ratio, Modified Atkins Diet, and MCT Ketogenic Diet.  Families got to take one home and they were a huge hit. We are in the process of putting some US versions of the recipe books together so keep an eye out for them in the next few months!

See the video summary of Family Day here.

Well done, Matthew’s Friends, on a very successful, informative, and fun Global Symposium. We are already looking forward to seeing everyone in Banff in 2016!

-Mallory

Below are some photos from the week.

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The Modified Atkins Diet for Epilepsy

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

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

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

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

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

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

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

When is the Modified Atkins Diet Used?

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

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

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

-Ellen

KetoCal® is a medical food for the dietary management of intractable epilepsy and is intended for use under medical supervision. Talk to your healthcare provider to determine if KetoCal is right for you. 

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Birthday Cakes for Children on the Ketogenic Diet: Part 2

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How to Create an Awesome Pretend Birthday Cake for Your Tube-Fed Keto Kid

Last week, we talked about keto-friendly birthday cakes for children on the ketogenic diet. In today’s post, I’ll share some ideas for making non-food, pretend birthday cakes for keto kids who are tube-fed or exclusively formula-fed.

My younger sister, who has epilepsy, has been tube-fed for many years. However, up until a few years ago, she was able to eat some food by mouth and always enjoyed tasting her birthday cake. After she became strictly NPO due to swallowing problems, I worried she would be disappointed by a lack of a birthday cake so I made her this pretend pink and purple princess cake out of cardboard, felt paper, ribbon, tissue paper and glitter paint. I poked little holes in it and inserted candles for her to blow out (you could also use flameless candles for a more fire-safe option). Her favorite part of celebrating her birthday is everyone singing “happy birthday” to her (seriously, the amount of joy she gets from a single song is unparalleled) so she didn’t seem to miss eating cake at all. In fact, I think she loved the foodless cake even more because she could keep it and we could relight the candles and sing over and over again, all year long (she’s really confused about her age now).

To make the pretend cake, I cut two big circles (about 12 inch diameter) out of cardboard to be the top and bottom of the cake, along with one long thin piece of poster board that I wrapped in a circle and taped to be the middle of the cake (the diameter of this circle should be about the same as the two big circles you cut). I taped one of the big circles on top of the wrapped poster board and the other on the bottom.  Then I covered the whole thing with paper mache and let it dry overnight. After it was dry, I covered it with colored felt paper that I cut to match the size of the top of the cake and the sides. Last, I decorated it with different colored ribbon (wrapped around the sides to look like layers), glitter paint, fluff balls, and balled up white tissue paper to look like frosting. I used a glue gun to attach the decorations, but super glue would probably work fine if you don’t have one.

If you are crafty, you can find some awesome sewing patterns and craft tutorials for making more elaborate pretend birthday cakes. We’ve collected some of these on our Pinterest page. Some of the ideas require fairly advanced sewing skills but others are more basic.

Another idea is to make a birthday cake piñata (such as this one) and fill it with non-food treats like stickers, pencils, toy cars, necklaces, etc. You can use it as a pretend cake to sing happy birthday, then use it as a piñata afterwards. Alternatively, you could make a piñata-like box cake made of decorated boxes with gifts inside that your little one can “open”. Here is a great example shared by the FPIES Foundation: cake with gifts inside and cake with gift boxes opened (Note- FPIES is not related to epilepsy or the ketogenic diet but children with this condition also must follow very restricted diets).

If your child is really into a certain theme, you can make a themed pretend birthday cake. Party supply stores and grocery stores usually sell cake topper kits of popular kids’ interests and movies (I found some Frozen and Despicable Me 2-themed options in my local grocery). For a pretend cakes, you can just glue them on. You can choose colors for the pretend cake according to the theme you are doing, then glue the toppers on last.

If you are looking for a fun activity for the party, you could even let each child make their own pretend birthday cake. You could prepare basic white “cakes” out of boxes covered with white paper, then let the kids decorate it with paint, tissue paper, glitter, jewels, etc.

Like we talked about last week, food restrictions don’t have to keep you from throwing your child an awesome birthday party. Creating a fun foodless birthday cake is a great way to make your little one feel special and to celebrate another year and milestone.

-Mallory

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