A Year in Review: Celebrating Milestones at Keto Hope Foundation

As 2024 comes to a close, we at the Keto Hope Foundation are reflecting on a year filled with meaningful accomplishments and inspiring connections. It’s been a journey of growth, learning, and impactful moments that strengthen our commitment to supporting families managing epilepsy through ketogenic therapies. Let’s take a look back at some of this year’s highlights.

Published Research: Advocating for Caregivers and Families

This year marked a significant milestone with the publication of two research articles close to our hearts.

In June 2024, we shared our heartfelt voices in Pediatric Research with our article, “Family reflections: A candid view from caretakers of patients with pediatric epilepsy”. This piece offers an intimate glimpse into the triumphs and trials of caregivers, highlighting their resilience and need for understanding from the broader healthcare system.

Then in July 2024, our literature review, “Support for caregivers of children on the ketogenic diet for epilepsy and other neurologic disorders”, was published in Epilepsy Behavior. This work sheds light on the challenges caregivers face, emphasizing the importance of providing accessible resources and emotional support. We hope it serves as a foundation for future discussions and solutions within the medical community.

Both publications are milestones in advancing the conversation around caregiver and family support—a topic central to our mission.

Keto Talk Podcast: Sharing Our Story

We had the privilege of being interviewed on the Keto Talk podcast. This platform allowed us to connect with a wider audience, sharing insights into ketogenic therapies and our dedication to empowering families. The experience was a reminder of the importance of advocacy and education in transforming perceptions about medical ketogenic diets. Listen to the podcast here. 

GLUT1 Deficiency Summit: Building Community

In June, our team attended the GLUT1 Deficiency Summit in Dallas, Texas. This incredible event brought together families, healthcare professionals, and researchers united by a shared goal: advancing the understanding and management of GLUT1 Deficiency.

The opportunity to meet so many amazing individuals—families courageously navigating rare conditions and clinicians pushing the boundaries of care—was profoundly inspiring. The Summit reminded us of the power of collaboration and the strength that comes from community.

Looking Ahead: Exciting Developments

While reflecting on the past, we’re equally excited about the future. On March 8th, we’ll host a special fundraiser in Charleston, South Carolina. While we can’t reveal all the details just yet, we promise an event that will celebrate our mission and community while raising critical funds to support families. Stay tuned for updates—this is one event you won’t want to miss!

Thank You for Supporting Us

None of this would have been possible without the unwavering support of our community. To the families, caregivers, healthcare providers, and supporters who walk this journey with us: thank you. Your dedication fuels our efforts and inspires us to keep striving for better resources, stronger connections, and a brighter future.

As we close the chapter on 2024, we look forward to continuing this work together. Here’s to making 2025 just as impactful!

Image: Jessica Lee & Laura Dority (Keto Hope Foundation Co-Founders) 

Image: Daisy Argudin (Keto Hope Foundation Program & Social Media Manager) 

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Growing Pains

By Jessica Lee

We started our ketogenic journey when our daughter was an infant and while it felt strange to travel with extra cans of keto formula or bring a scale to a restaurant, having a very young child with a disability can sometimes be a little easier because sympathy is more readily expressed by strangers. Once your child starts growing up, new environments mean new challenges. While our daughter is no longer on the diet, we do keep a tight rein on her nutrition in general and even that can sometimes feel like a struggle as she sees other kids at school and their versions of lunches and snacks. 

In talking to another mom of a keto kid, she brought up the issue of bullying and social isolation when kids get older, specifically in middle and high school. Such a delicate time period for our children’s development and critical to their self-esteem, yet there aren’t many resources out there to support kids on medical diets.  Add to what we remember as kids the new area of cyberbullying and one can easily feel helpless.  

The CDC defines bullying as “any unwanted aggressive behavior(s) by another youth or group of youths who are not siblings or current dating partners that involves an observed or perceived power imbalance and is repeated multiple times or is highly likely to be repeated. Bullying may inflict harm or distress on the targeted youth including physical, psychological, social or education harm.” 

 Estimated rates of bullying are anywhere from 7-31%. 

 Victims of bullying are at increased risk for depression, anxiety, relationship problems, poor health, poor academic performance, and suicidal ideation/attempts.  

Boys, minorities including LGBTQ youth, overweight, youth with ADHD/autism/learning disabilities, youth with epilepsy and food allergies are more likely to experience bullying.  

While we all hope we have instilled confidence in our kids that will carry them through tough times, here are some tools to help in those hard moments.  

Protective factors include parent connectedness and positive parenting as well as empowering children with skills to handle bullying.  Here are some steps to empower your keto kid! 

1. Ensure safety-talk with your child about the situation to determine if there is any physical harm or concern for suicidal ideation (and contact authorities when appropriate)

2. Build skills 

   a. Role playing-children can learn how to respond to a bully  Ex) Look directly at the bully, speak in a firm loud voice “You don’t scare me”, “Be cool and stop this”, or “Why are you talking to me?” 

   b. Walk away with your head held high and tell a teacher or parent 

   c. Consider bringing a keto snack to have your child share with the rest of the class (something yummy!) 

   d. Cyberbullies-Don’t respond, keep evidence, block the bully, talk to a trusted adult and report it to school 

3. Empower adults and kids to step in 

   a. When bystanders intervene, 57% of episodes cease within 10sec 

   b. Increase awareness by promoting empathy toward victims 

   c. Condemn the behavior, not the bully 

   d. Have a talk with your child’s teacher to learn what they are seeing at school and work together 

If you feel your child is being bullied and needs further attention, consider talking to a local counselor or therapist about helping.  

Remember you are not alone! We have families ready to help with our Keto Friends network. While we are often matching parents, we have older kids and young adults who would be happy to talk to an older child who is struggling.  Our keto community is strong and growing! 

Sources include CDC, American Academy of Pediatrics, Contemporary Pediatrics 

2021 is FINALLY here!

By Jessica Lee

You made it! We made it! 2021 is FINALLY here!  

Why does it feel so tough to celebrate?

It’s because 2020 was a hard year.  Many of us have experienced loss in some way or other.  Loss of loved ones, loss of jobs, loss of routine and comfort.  Feels strangely familiar for some of us I bet.  A new epilepsy diagnosis often brings similar despair, doubt and hopelessness. 

So how do we move forward? 

1. Acknowledge the past-

   While going numb or burying your head in the sand may save you initially, you have to experience those emotions so the emotion can be separated from the memory, sparing you the painful parts later on. It’s a process. 

2. Grieve-

   It’s ok to be angry, sad, guilty, in denial, etc. Get those emotions out in a constructive way. Punch a pillow, cry in the shower, bake cookies, or meditate. Then move on by digging into whatever comforts your soul spiritually and resting there for a while. 

3. Look for the helpers-(Thanks Mr. Rogers)

   You’ve figured out by now who you can count on and who you can’t. Nourish those healthy relationships and don’t be weighed down by the disappointing ones. Relationships are fluid and dynamic-changing which ones you prioritize now is ok. 

4. Change your perspective-

   Adversity can knock you off course, but sometimes the new path is not so bad either. Look to the small things for moments of joy. Think about how things appear from the other side of the looking glass.

5. Take it one step at a time-

   Healing can’t be rushed. Living can’t be rushed. And you are good. 

As we enter our 5th year at Keto Hope Foundation, we will be putting this mindset to work also. We may have had high hopes for projects in 2020 that had to be sidelined, but what materialized instead was in some ways much better. 

In 2021, we look forward to expanding the Keto Friends network for improved peer-to-peer support for you, introducing new members to our Keto Hope Foundation team, joining Nutricia KetoCal in celebration of the keto community, educating health care providers on the nuances of the diet, and sharpening focus on healthcare disparities specifically affecting families using the ketogenic diet as medical therapy. 

Let’s get started!

Modified Ketogenic Diets: The Ins and Outs of Success

By: Laura Dority  

The Keto Hope Foundation recently hosted a webinar titled: Modified Ketogenic Diets for Adults and Pediatrics that was attended by more than 80 RDs across the globe.  We were fortunate to have 2 experts present on the topic – Kelly Roehl, MS, RDN-AP, LDN, CNSC from Rush University Medical Center in Chicago, IL covering the adult aspects of modified diets and Robyn Blackford, RDN, LDN from Lurie Children’s Hospital of Chicago sharing her unique protocol for modified ketogenic diets for pediatrics. Below is a summary of the webinar.  

What is a Modified Ketogenic Diet?  

First, we need to define what is a modified ketogenic diet. Unfortunately, there is no one universal definition which makes evaluating research on this topic difficult.  Let me offer a simple definition that aligns with the research of modified ketogenic diets.  

When research refers to a “classic” ketogenic diet it is referring to the most restrictive form of therapy and is often prescribed as a ratio of fat grams to carbohydrate and protein grams with all foods being weighed on a gram scale.  For example, a 4:1 “classic” ketogenic diet means the diet prescription provides 4 grams of fat to every 1 gram of protein and carbohydrate combined.  You may see ratios ranging from 1:1-4:1 with 3:1 and 4:1 being the most common.  

On the other, there is no exact definition on “modified” ketogenic diets. Modified ketogenic diets may refer to low ratios (1:1, 2:1) or they may also refer to a version of modified Atkins or low glycemic index treatment.  Essentially anything that is not a “classic” ketogenic diet is considered modified.  For a great visual on the different forms of ketogenic diet therapy check out the Charlie Foundation website.   

One thing that both the “classic” and modified ketogenic diets have in common is that they typically induce ketosis by shifting the metabolism from using glucose as an energy source to fat/ketones. The only exception to this may be low glycemic index approaches which may not induce ketosis in all patients.  

What are the Benefits of a Modified Ketogenic Diet?  

• Less restrictive  

• Improved compliance 

• Reduced risk of side effects  

• Outpatient initiations  

• Great stepping stone/starting point 

Modified ketogenic diets have allowed dietary therapies for epilepsy to expand outside the restrictive “classic” approach. Patients that were not able to stick with a “classic” approach or maybe were not medically appropriate have more options that carry less side effects and offer similar benefits.  

What is the Efficacy of the Modified Ketogenic Diets?  

Pediatrics 

When done correctly the modified ketogenic diets can be effective at improving seizures.  A review in 2016 of over 400 patients, showed an 85% chance of seizure reduction with the “classic” ketogenic diet and a 60% chance of seizure reduction with modified.    

For those children that start on a modified ketogenic diet – what happens if they switch to a classic approach?  Great question - research indicates that 37% of children on a modified ketogenic diet can get an additional 10% improvement in seizures by switching to a “classic” approach but only a few became seizure free. However, if a child did not have any seizure improvement on a modified approach switching to a “classic” approach was not beneficial.   

Adults 

A meta-analysis looking at 270 patients in 2015 showed that 34% of patients that tried a modified ketogenic diet had more than 50% seizure improvement and the compliance rate was 56%.  When comparing to the “classic” ketogenic diet, 52% had at least a 50% improvement in seizure control but the “classic” ketogenic diet only had a 38% compliance rate. While this is only one study, it does indicate that while the modified diets are not as effective as the “classic” approach they do improve compliance. This could be key for patients who are unable to comply with the restrictiveness of the “classic” approach and otherwise would not have done any ketogenic diet treatment.   

A study done at Rush University compared a modified ketogenic diet allowing 15 grams of carbohydrates (MKD-15) and 50 grams of carbohydrates (MKD-50) in terms of efficacy, compliance and quality of life. Individuals on MKD-15 were more likely to have improvement in seizures and more likely to report an improvement in quality of life.  These results indicate that a more aggressive carb restriction had better outcomes and reflected on improved quality of life.  

Simple Initiation Protocol: 

Robyn Blackford, RDN, LDN shared her protocol for initiating a modified ketogenic diet that she created in 2006. One benefit of this approach is allowing a patient to ease into diet therapy and the potential of finding seizure benefit on a less restrictive goal.  Please do not attempt to navigate any form of ketogenic diet without support from a knowledgeable RD.  

• Step 1: Take the average number of carbohydrates eaten from a 3-day food log.  

• Step 2: Divide the average carbohydrate intake in half to determine your starting carb restriction.  

• Step 3: Decrease carbs by 10 grams every week until at 40-60 grams/day or seizure improvement achieved.  

Chart adapted from: Comparison of diet therapies for epilepsy. The Charlie Foundation at www.charliefoundation.org. 2012.

How Do You Choose Modified vs “Classic”?  

The consensus statement from 2018 showed that experts agree --- all forms of the ketogenic diet are valid and beneficial.  

“Classic”  

• Patients with a g-tube for nutrition   

• Infants and toddlers  

• Families that need a lot of structure and guidance  

Modified    

• Patients will less intractable epilepsy  

• Teenagers and adults  

• Picky eaters  

• Families that are reluctant to “dive in” to ketogenic therapy can use a modified approach as a starting point or a way to get their feet wet.  

Side Effects and Solutions  

Side effects are similar in children and adults. Modified ketogenic diets have less side effects when compared to the “classic” approach. This is likely due to a lower level of ketosis and “dose of diet.”  

Chart credit: Kossoff EH, Turner Z, et al. The Ketogenic and Modified Atkins Diets: Treatments for Epilepsy and Other Disorders. 6th ed. Demos Health, 2016. 

Conclusion:  

Modified ketogenic diets are effective in improving seizure frequency, severity and quality of life for both pediatrics and adults. Studies indicate that all types of epilepsy respond to modified ketogenic diets but those with generalized epilepsy may respond better. The modified ketogenic diets generally have less side effects compared to the “classic” approach. It’s important that families always remember that the modified ketogenic diets are a low carb AND high fat diet. Only doing low carb without the high fat aspect will not equal success. Intentional consumption of fat is key!  

Resources:  

• Roehl K, Falco-Walter J, Ouyang B, Balabanov A. Modified ketogenic diets in adults with refractory epilepsy: Efficacious improvements in seizure frequency, seizure activity, and quality of life. Epilepsy Behav. 2019. April (93):113-118.   

• Kossoff EH, Turner Z, et al. The Ketogenic and Modified Atkins Diets: Treatments for Epilepsy and Other Disorders. 6th ed. Demos Health, 2016. 

• Kossoff EH, Zupec -Kania BA, et al. Optimal clinical management of children receiving dietary therapies for epilepsy: Updated recommendations of the International Ketogenic Diet Study Group. Epilepsia Open, 3(2): 175 - 192, 2018. 

• Comparison of diet therapies for epilepsy. The Charlie Foundation at www.charliefoundation.org. 2012.  

Sunday Funday

Jessica Lee

I know what you are thinking…mimosas, brunch, maybe a day at the beach? Well let me rein you back a bit, I’m talking about FOOD PREP day! 

One of the first things I had to learn once we started the ketogenic diet was how to efficiently use my time and not feel completely stressed out for each meal.  Given that I (and maybe most of you) also work full time that left two days with any amount of time to plan meals. 

I know this pandemic has changed the way a lot of you grocery shop but I will admit we were once-a-weekers before this all started. And Sunday was our day. Therefore, Sunday was also my food prep day for the week for ketogenic meals and snacks.  I got in the habit of unloading groceries and getting right to it.  

When we started my daughter was still mostly on purees so there was a lot of steaming going on in the kitchen. I found it so helpful to chop, steam, mash or blend, and freeze portions of all of her vegetable and fruit options. Then I could pull out a few, thaw, and mix in her “fat” (often butter or coconut oil).  We did a lot of scrambled eggs and I have a great hack for that too.  

As she got older, I was doing more chopping and “jarring” to have quick access for snacks and meals. To be honest, this is something I still do for my family!  When they are whining because they are hungry, do I have time to get a cutting board, knife, and pepper out and cut it all up, then clean up? No way! But, if I can grab a jar with precut peppers to give them then I am much less likely to reach for that bag of chips instead.  An added bonus is that I NEVER throw produce away anymore. Seriously, before I did this jar method I would get so frustrated at the produce gone bad by day 4 or 5 after the grocery run but NO MORE!  Recently I also bought some kid friendly knives so they can “help” ;)

Ok so let me hit a few key points here:

• Eggs-pretty much the breakfast staple for us. I know some kids have egg allergies, so I apologize for not addressing that here (but we have an amazing previous post on egg/dairy free keto you can check out).  You know by now that a large egg is about 50 grams in weight but get yourself a salad dressing bottle and whisk up half a dozen, then you can just pour them into your weighing bowl each morning! (Funny side note, when I looked up a picture of the one we used, it labeled them as vintage…am I really that old??)

• Veggies-Chop and steam! Then freeze in little containers like these below. I know some people say don’t do batches until you know your kids like that certain something  but I disagree.  I found with both of my kids that repetition was key.  If they didn’t like it this week, I’d try again in another week or two, and the great thing is you’ve frozen them so it doesn’t go bad! 

• Fruits-Chop and mash, then freeze. Label baggies of course. Again, if at first you don’t succeed, try, try…and try, and try again!  In young ones their taste buds are developing so expose them to a lot of flavors. 

• If you’re past the puree stage, grab some mason jars (or save old jelly and pickle jars)-wash, dry and chop. Close that lid tightly and they will stay fresh for well over a week. 

• We did have a rotation of staple meals so I knew each week I could count on those.  I did continue to try new things with her, but if a sitter and family member was watching her I would have a tried and true meal ready. Also, it was easy to pack portions for eating out or trips where I couldn’t be certain we would have access to foods appropriate for her needs. 

It takes time to settle into a new routine but I suspect we have all learned this year how to be more adaptable. While it seems like a lot of work it truly saves times for the rest of the week!

So, gather your goods and settle in as Lee Brice croons…

“Songs in the kitchen

And playing on the radio

Coffee on the counter

Bacon frying on the stove”

New Year Resolutions

1/6/20

By Jessica Lee

New year, new you…right?

At this point you’ve probably made (and broken) your new year resolutions at least once.  Don’t worry, we have all been there. Maybe it was to start exercising regularly, go on a spending freeze, or call your parents more often…whatever your resolution of choice, everyone seems to be on a common journey for self-improvement this time of year.  

Every day we wake up and have choices to make. Each of those choices sends you down a different path, sometimes doubling back or intersecting with a previous path. When mistakes are made, we (hopefully) learn from them and don’t revisit that path for some time (if ever).  The important thing is that we keep moving, keep trying. You will make bad choices sometimes and unfortunately that choice can mean the difference between seizure or no seizure, but we want to provide tools and resources to foster the good choices. 

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Many of you wrote back to say you feel lost, confused, overwhelmed, frustrated with all of the information out there about the ketogenic diet. It certainly has reached a peak of popularity in the health and fitness world, not without controversy, meanwhile news outlets are constantly featuring stories about how keto ranks last on the list of recommended diets. 

Personally, I am surprised at the animosity some influencers/physicians/nutritionists have against the diet!  They seem almost angry that anyone would consider keto as an option.  It made me pause for a moment and think “Did I just ruin my kid’s health forever by putting them on this diet for their epilepsy?” And then I remember what it was like before. Hundreds of seizures in a day is nothing that these experts (I am tempted to put that in quotes) have witnessed, and they certainly haven’t witnessed the positive effect from the diet.  I will never regret the diet that saved my daughter’s life.  Instead I hope to learn more about it, find ways to better utilize it, and help further research that we can use to promote the best possible outcomes. 

6 months into her ketogenic diet journey

I would not say that this diet is for everyone with epilepsy or will be successful for everyone that tries it but for those of us who have exhausted traditional Western medicine in search of seizure relief, the ketogenic diet can be a welcome space for a weary traveler.  Don’t let the people who cut you down because of your decision to pursue this diet overcome your will and determination.  Remember that their knowledge of the ketogenic diet is likely colored by what they see on mass media as well, so approach them with grace (and maybe a little re-education).

It is in this mindset that we at Keto Hope Foundation hope to encourage you on your ketogenic journey. This year we will focus on content that is geared toward YOU as a person with epilepsy on the ketogenic diet.  We will continue on this journey with you.

Guest Blogger: Meet the Argudin Family!

7/7/2019

By Daisy Argudin

Our life is often segmented by the big moments. Births, deaths, weddings are all such moments. Realizing your child has epilepsy is also one of those moments. It's not easy to think of your child as having special needs, it is also not easy to realize you are now a special needs parent. 

I can remember the first time I saw my 3 year old Jo have a seizure. We had a great day out doing some toy shopping and we were getting ready to head home. As he climbed into his car seat he paused looked at me and blinked several times and continued on as if nothing happened. It seemed a bit odd but not enough for me to worry. In the next few days I saw similar episodes but just wrote it off as being tired or hungry and didn't give it much thought. 

Then one day, Jo and I were talking and he started to slur his words, blankly stare up and blink repeatedly. Suddenly he stopped blinking and just walked away from me. In that moment I knew something was wrong. Being a 21st century parent (haha!) I went to Google and quickly suspected we were dealing with epilepsy. My husband had epilepsy as a child, although I never knew that it could be hereditary. 

Within a few weeks we had seen a neurologist that had confirmed the diagnosis.  

ABSENCE EPILEPSY

Although there are thousands of people living with epilepsy when your child has it you feel like you are the only ones in the world. But you are not alone!

My heart breaks when I see him have a seizure. I also worry about when and if he will outgrow them. I wish I didn't know terms like EEG, and 3 megahertz spikes, generalized seizure, SUDEP (sudden unexpected death in epilepsy), and so many more. 

The modified Atkins diet (MAD) has been a good fit for our family. It's a lower carb, moderate protein, high fat diet. We as a family have learned how to cook for Jo and how to make him feel included. His allergies to dairy and eggs limit our food choice but have also made us more creative!

Epilepsy hasn't just affected Jo, it has affected all of our lives. My boys all advocate for the use of a carb-restricted diet to help with epilepsy. People are often impressed with Jo's willingness to stick with the diet since it isn’t always easy. I remember crying for days when this all began.

Now two years later, there is a bit of a routine in our lives that makes the diet manageable, but it’s seeing how much the diet has helped him that gives us the inspiration to keep going!

How has epilepsy changed your family?

The Ripple Effect

3/18/19

The Epilepsy and Behavior journal recently published a small population study interviewing the parents of young children (ages 1-7) with epilepsy. Their main goal was to gain a comprehensive understanding of the experiences, challenges, and needs of these parents. The study consisted of 40 total families and interviews focused on these main topics:

·     Diagnostic journey

·     Parental perception of epilepsy management

·     Awareness/impact of neurobehavioral disorders on child’s quality of life

·     Availability of therapeutic and educational supports

·     Impact on family functioning

·     Need for parental support

Some of the concerns researchers found centered on referral delays or lack of time and direction from the healthcare providers. Parents specifically wished for more thorough explanations about possible side effects of anti-epileptic drugs and for a more integrated approach to treatment, including not only goals of seizure freedom but addressing behavioral and mental health goals as well.  

The stress on family life impacted not only parents but also siblings and extended families, affecting sleep, family activities, holidays, finances and job security. More frequent emotional support was desired across the board among parents.

Experiences and needs of parents of young children with active epilepsy: A population-based study. 

Jones C, Atkinson P, Memon A, et al. Epilepsy & Behavior, 90 (2019): 37-44.

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One of the best pieces of advice I received soon after our daughter was diagnosed was to make sure to nurture our marriage in the midst of all the appointments, blood tests, MRIs, EEGs, and hospital stays.  It is now the same thing I make sure to emphasize when I am talking to parents facing a new diagnosis of epilepsy, cerebral palsy, or other neurological condition in their child.  I also tend to recommend keeping a diary or journal just as a place to write things down so you can mentally rest. You can make to-do lists, track seizure activity to have handy for the next doctor’s visit, or just have a place to unload your fears or dreams for your child. But sometimes you need more.

The impact of epilepsy or any serious medical illness on a family has a ripple effect.  If you don’t have a support system those ripples can turn into tsunami waves that have the potential to destroy marriages, families, and friendships.  Find your source of strength, courage and hope-whether it is your faith, significant other, parent or friend-and nurture it. 

We are looking forward to expanding and improving our Keto Friends network in a direct effort to meet the needs of parents like you (and me) who need and deserve personalized emotional support. If you have any interest in becoming a support parent please email us at info@ketohope.org. 

-Jessica

Ketogenic Diet: A Parent and Child Perspective

3/4/19

Looking for some insight on what it’s like to be on a ketogenic diet?  Well look no further!  We are so excited to release our newest webinar that is geared towards caregivers and patients who may be considering a ketogenic diet for treatment of their epilepsy or who are already on the ketogenic diet but need some tips and tricks to stay on track.  Trust me, we know that staying compliant on this restrictive diet can be tough and we applaud you for your efforts!

We’ll dive deep into the daily lives of the Rushton family who have a son, Xavier, on the modified Atkins diet (MAD) for epilepsy. The webinar covers a lot of great information in about 60 minutes-feel to free to take a break and come back!  Hopefully it can provide you with at least a few tips on how to make the ketogenic diet easier for you.  

Topics covered: 

·      Xavier’s Favorite Keto Friendly Foods

·      Substitutes to Kid Favorite Foods (pizza, bread, crackers) 

·      Importance of Setting Clear Goals and Expectations with Your Healthcare Team 

·      Appropriate Monitoring and Follow-Up When on a Ketogenic Diet

·      Possible Side Effects and How to Prevent Them 

·      Resources, Resources, Resources 

·      Several Frequently Asked Questions Answered by A Family that Lives Keto Every Day

o  How to get other family members involved? 

o  How to be successful with the school? 

o  What to do for holidays and birthday parties? 

o  Many, many more!!!

If you are looking for more support, reach out to us via our Keto Friends initiative page to see if we can pair you with a support buddy.   If you have questions for us or for the Rushton family after listening to the webinar, leave a comment so we can get back to you! 

-Laura

Goodbye, Hello!

By Laura and Jess

2/25/19

First and foremost, we want to thank each and every one of you for your continued support!  Whether you follow us on social media and share our posts or have donated to our foundation, we appreciate you! You probably know by now that as of 2019 we decided to close the Keto Hope Bakery.  We know a lot of you were sad about this decision as you loved our tasty treats so we wanted to give you a little insight into our thought process.   

The team at Keto Hope is heading in a new direction. But before I go into this new direction, let’s back up a bit and talk about why we started the bakery. Four years ago when the original team at Keto Hope sat down and started talking about missing links and gaps in the ketogenic diet community the one concept we kept coming back to was there were no easy, ready-to-go, convenient snack products.  So to fill this huge need we went to work testing dozens and dozens of recipes and came up with the cheddar cracker, bread mix and the vanilla cookie.  For a few years our products were pretty much alone in the market place but then something changed. The marketplace for ketogenic products EXPLODED.  If you do a quick Amazon search, hundreds of ketogenic friendly snacks are available (in fact 925 suggestions to be exact). Our small little bakery just couldn’t compete with these big corporations.  

Over the past two years the ketogenic diet has become a very popular “fad diet” promoted by celebrities and touted to help with anything from weight loss to chronic pain.  This is not entirely different than what happened with the gluten free community several years ago.  Gluten free originally was designed for people with Celiac disease and few products were available in the grocery stores or on-line. Then it became a “fad diet” and BAM…thousands of products and the term “gluten free” can probably be found in several products in your pantry right now.  So since ketogenic diets have gained popularity, the consumer demand for keto friendly products have skyrocketed and the food industry has responded by bringing hundreds of new products to the market place.  

Therefore, with some sadness but mainly excitement about new future opportunities, we chose to shut down the bakery.We felt that we could use our expertise and knowledge in a different way to serve the epilepsy community.

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New Directions

We still have the Keto Friends initiative that pairs up keto diet newbies to a knowledgeable support person.  Jess is working hard to reorganize this in a way that is more “user-friendly” and can better serve the needs of families.  We also have the Keto Education initiative where we offer webinars for Registered Dietitians to learn more about the ketogenic diet for epilepsy and other neurological disease states.  So far we have hosted 3 webinars: 

·      Use of the Ketogenic Diet in the NICU: Safety and Tolerability by Lindsey Thompson MS, RD, CSP, LD at Children’s Mercy Hospital in Kansas City.

·      Ketogenic Diets and Medications by Eric H. Kossoff, MD at Johns Hopkins Hospital in Baltimore, MD. 

·      Ketogenic Diets and Cancer by Denise Potter RD, CSP, CDE with Potter Dietitian Consulting, LLC.

We are super excited to be releasing a new webinar soon that is geared towards patients and their caregivers.  For this webinar, we dig deep into the realities of life on a ketogenic diet by interviewing the Rushton family from Indiana who have a son, Xavier, following a modified Atkins diet (MAD) for epilepsy.  The webinar features Xavier himself giving tips and tricks on how to be successful on such a restricted diet.  Look for more information about this webinar in a future blog post!

In addition we are starting this blog in hopes that it will be a great resource for ketogenic product suggestions and reviews. Now that there are hundreds of products that are deemed “keto” how do you know if they are appropriate for someone on a ketogenic diet for epilepsy versus someone using the diet to lose weight (which may be very different)?  One of our goals is to provide unbiased opinions about keto products to help ease your burden of endless hours of google searching or buying products that end up tasting like cardboard.  We are going to taste these products (both our adult and kiddo team members are on our tasting panel), analyze their nutrient profiles and let you know what we honestly think! Is it worth your money?  Is it truly ketogenic friendly?  A few topics we are currently working on: 

·      Top Ten Keto Snacks for On-The-Go

·      Top 5 Keto Shakes 

·      Keto Friendly Dips and Sauces 

But remember we are here for you!If you want us to review a product or you have a good suggestion for a topic, we would love to hear it!In addition, if you are reading this and are a manufacturer of a ketogenic product – we would love to try it and post a review of it! Challenge accepted?

Keto Hope in the Post & Courier

Check out the wonderful article in the Charleston Post & Courier about the ketogenic diet and the launch of the Keto Hope Foundation!

The Post and Courier

Charleston Mom's Blog - "Rosemary's Smile"

Learn more about Rosemary and her journey at the Charleston Mom's Blog with their wonderful article called "Rosemary's Smile".

http://charleston.citymomsblog.com/motherhood/rosemarys-smile/