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?

Low Carb Ice Cream: A Keto Treat to Beat the Heat

6/2/2019

To be honest, I am super skeptical of all the low carb ice creams that have recently hit the market. I’m an ice cream fan-I LOVE ICE CREAM-and frankly I like the real deal but the reality is you can’t have normal ice cream on a ketogenic diet due to the large amounts of carbs and sugar.  

So I ventured out to my local grocery stores and picked up a few pints of low carb ice cream from various brands. I tried four different products and trust me there are way more out there but I chose products that were easy to find…no special shipping.  I went to two different stores – Wal-Mart and Harris Teeter - because when you are on a ketogenic diet and craving some ice cream it needs to be easily accessible.  I tried to keep them all the same flavor for “controlled” taste testing but I couldn’t find all matching flavors unfortunately.  

Here is the nutrition information and the feedback from the tasters (ranging in age from 1-40 years old) for our low carb ice cream contenders: 

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#1 Enlightened Cookies and Cream 

·      ½ cup serving: 90 calories, 2.5 grams fat, 18 grams total carbohydrates, 4 grams fiber, 6 grams sugar, 6 grams sugar alcohols and 5 grams protein 

·      Smooth, creamy texture but has a slight aftertaste.  It visually though looks just like regular ice cream.  

#2 Halo Top Cookies and Cream 

·      ½ cup serving: 80 calories, 2.5 grams fat, 15 grams total carbohydrates, 3 grams fiber, 6 grams sugar, 5 grams sugar alcohol and 5 grams protein 

·      Almost like an “ice milk” and has minimal cookies in it.  Does not have an aftertaste but overall has a less distinctive ice cream taste to it.  

#3 Artic Ice Cookies and Cream 

·      ½ cup serving: 90 calories, 2.5 grams fat, 16 grams total carbohydrates, 3 grams fiber, 11 grams sugar, and 2 grams protein 

·      More cookie chunks compared to other brand and no aftertaste.  

#4: Breyer’s Carb Smart Peanut Butter

·      2/3 cup serving: 150 calories, 9 grams, fat, 17 grams total carbohydrates, 0 grams fiber, 5 grams sugar, 7 grams sugar alcohol, 3 grams protein 

·      Salty and sweet tasting without having an overpowering peanut butter taste.  

(For comparative value: Breyer’s Classic Cookies and Cream in ½ cup serving has 140 calories, 4.5 grams fat, 23 grams total carbohydrates, 0 grams fiber, 15 grams sugar, and 2 grams protein.)  

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Alright so first let’s evaluate the nutrition of these low carb ice creams. The truth is they aren’t really keto.  Well at least not as is… They don’t have enough fat and if you subtract only fiber (and not sugar alcohols) they might not fit into your keto plan.  The lowest carb option subtracting fiber alone is the Halo Top at 12 grams net carbs and it’s 8 net grams if you subtract both fiber and sugar alcohols.  

Since artificial sweeteners are used in low carb ice creams let’s take a closer look. Enlightened and Halo Top contain the sugar alcohol erythritol while the Breyers Carb Smart contains sorbitol.  This is an important distinction because sorbitol contains 2.6 calorie per gram (sugar contains 4 calorie per gram) while erythritol is only 0.2 calorie per gram.  

What does this mean you might be asking yourself?  It means that since your body doesn’t absorb erythritol, it isn’t going to impact your insulin/glucose response and theoretically not impact your ketosis. Compare with sorbitol which is absorbed and has a much higher chance of negating ketosis.  

Want to learn more about sugar alcohols?  Check out this great  fact sheet from the International Food Information Council Foundation.  

Overall the low carb ice cream fan favorite was Breyer’s Carb Smart Peanut Butter.  In my RD opinion, this is probably the least keto friendly due to the high amount of total carbohydrates, no fiber and sorbitol as a sweetener.  So let’s give a shout out to our close runner-up and best all around low carb ice cream-the Halo Top brand cookies and cream.   

Regardless of the taste preference though, you have to add more fat to these low carb ice creams to consider them truly ketogenic.  Remember, from an epilepsy standpoint, ketogenic doesn’t just mean low carb but low carb AND high fat.  So whip some heavy cream to a stiff consistency and top it on the ice cream.

Try this simple recipe to make a 1:1 ketogenic diet ratio:  3 Tablespoons heavy cream provides 150 calories and 15 grams of fat. So when added to ½ cup of the Halo Top you get 230 calories, 17.5 grams fat and 17 grams of net carbs and protein combined.   

Have you found a low carb ice cream that works for you?

-Laura Dority

Convenience Keto Snacks: Top Picks and Toddler Approved

Over the past few weeks, the Keto Hope team has been tasting treats and snacks of all varieties.  So many new products have hit the market that claim to be keto friendly. But are they really? Will they fit into the criteria for a keto diet for epilepsy versus one being used for weight loss or athletic training that may be higher in protein and not quite high enough in fat?

In order to find the best snacks, we reached out to keto snack manufacturers and requested samples of their products. We wanted to evaluate the products in terms of both nutrition profile and taste. The taste panel included adults (even some neurologists), school-aged kids and toddlers. Yes, toddlers…the picky eaters themselves! Here is the conclusion from the group on the best convenience keto snacks. 

Mission Meats: A Savory Keto Friendly Treat

The Mission Meat products were the fan favorite for the adults on the taste panel. If you are looking for a savory snack, this is the product. In addition they give 10% of their proceeds to charities…good products and a great company! Be sure that you choose the pork and beef options which contain the highest fat amounts.  While the turkey products are equally delicious, they are much lower in fat. If you are following a modified ketogenic diet, you can probably work the beef and pork products in by themselves. On average they contain 7 grams of fat, 1 gram of carbohydrate and 8 grams of protein for about a 1:1 ketogenic ratio. For people on a higher ketogenic ratio, try adding more fat by dipping the meat sticks into guacamole.  

ChocZero: Truly Sinfully Healthy

The ChocZero milk chocolates are described on their package as “sinfully healthy” and our taste panel could not agree more. The toddler taste panel group loved these treats. One toddler couldn’t stop coming back for more and it’s possible she ended up eating about six pieces. The chocolates are sugar-free and do not contain any artificial sweeteners or sugar alcohols (a unicorn in the keto snack area). They are sweetened with monk fruit extract which is unique and delicious! Each chocolate has 1 gram of net carbohydrates but caution…it will be hard to eat just one. The carbs could add up quickly. With some self-control, one decadent chocolate a day would work into even the most restrictive keto diet.

FatSnax: Get In My Belly Cookies

Kudos to FatSnax for making not just low carb cookies (which lots of companies make) but also cookies high in fat.  Not only do these cookies fit into a keto lifestyle but they are also delicious. This was the top snack for our school-aged kiddos who nick-named them the “Get In My Belly Cookie”. With only 3-5 grams of net carbs (total carbs minus fiber) and 8-9 grams of fat these are close to a 2:1 ketogenic ratio. We do have to point out that they do contain stevia and sugar alcohols – both erythritol and a smaller amount of xylitol. Check with your keto team to determine if sugar alcohols are approved  for your personal keto journey. We would suggest counting at least half the sugar alcohol quantity in your carb count since xylitol can impact ketosis – erythritol less so. The cookies come in chocolate chip, peanut butter, lemony lemon and double chocolate chip flavors but the favorite from our group was the chocolate chip. 

Looking for more information about these companies and their products?  No worries…we dive deeper into their products and nutrition profiles in future blogs.

Top 5 Ketogenic Friendly Dips

4/1/19

With March Madness in full swing, brackets are being tested (as are friendships) and we want to help you out a little. In case you’re interested, the winning team will be…

…

Kidding, really we just want to help you enjoy the games with a little keto dip roundup of some of our favorite recipes. Each one has been kid-tested and approved!  The list includes one of my all time favorite recipes (it’s a classic!) as well as some newcomers that surprised me.  Our favorite dippers tend to be bell peppers, rainbow carrots, and jicama sticks (we love Trader Joe’s precut) but don’t let that stop your “top chef” game when exploring option like low carb tortilla chips, bacon strips or pork rinds. 

1. The “I just want to eat dip for supper” Buffalo chicken dip

•  8 ounces cream cheese, softened

•  1/2 cup sour cream

•  1/4 cup (sugar free) hot sauce (might want to decrease this for little ones)

•  1 tsp onion powder

• 1 tsp garlic powder

•  1/2 tsp ground black pepper

•  1 cup shredded, cooked chicken thighs

•  2/3 cup shredded mozzarella cheese

• 2/3 cup shredded sharp cheddar cheese

Preheat 350’F.

Beat cream cheese and sour cream with a hand mixer until smooth. Then add in hot sauce, black pepper and garlic and onion powders. Mix well. Stir in shredded chicken and 1/2 cup mozzarella cheese and 1/2 cup cheddar cheese (reserving the rest for the topping.) Stir ingredients together and spread across a 8x8 (or similar sized) baking dish. Top with remaining cheeses. Bake for 25 minutes until bubbly and cheese is melted. Serve warm. (12 servings)

1.5:1 ratio

1.3 net carbs per serving

(adapted from lowcarbdelish.com)

2. The “I’m everyone’s favorite” Keto Queso

·     2 Tbs butter

·     12 ounces white cheddar cheese, grated

·     4 ounces Monterrey Jack cheese, grated

·     ½ cup heavy whipping cream

·     ¼ cup water

·     4 ounces green chilis, drained

·     3 garlic cloves, minced

·     ¼ tsp cumin

·     ¼ tsp kosher salt

·     ½ tsp ground black pepper

·     1/8 tsp chili powder

·     2 Tbs fresh cilantro, chopped

In a double boiler, combine butter, cream, spices and water. Bring to slow boil then reduce heat to low. Slowly add cheese stirring with whisk continuously. Add green chilis and stir to incorporate. Serve immediately or pour into small crock pot to keep it warm.  (10 servings)

1.6:1 ratio

0.9 net carbs per serving

(courtesy of kaseytrenum.com)

3. The “Classic” Guacamole

·     3 avocados, halved, peeled, seeded

·     1 lime, juiced

·     ½ tsp kosher salt

·     ½ tsp cumin

·     ½ tsp cayenne

·     ½ medium onion, diced

·     ½ jalapeno pepper, seeded, minced

·     2 Roma tomatoes, seeded, diced

·     1 Tbs chopped cilantro

·     1 garlic clove, minced

In a large bowl place the scooped avocado pulps and lime juice, tossing to coat. Drain and reserve liquid. Use a potato masher to mash while adding salt, cumin, cayenne. Fold in onions, tomatoes, cilantro and garlic. Add 1 Tbs reserved lime juice, let sit at room temperature for 1 hour then serve.  (6 servings)

2.5:1 ratio

4g net carb per serving

(from the esteemed Alton Brown)

4. The “Mediterranean nights” Roasted Eggplant dip

 ·     1 medium eggplant (about 200g)

·     ½ tsp cumin

·     ¼ cup olive oil

·     1 Tbs lemon juice

·     1 Tbs tahini

·     2 Tbs sesame seeds

·     Salt and pepper to taste

Preheat oven to 400’F. Cut eggplant length wise and salt the cut surface, placing the cut side up on baking sheet lined with parchment paper. Bake for 30 minutes or until eggplant is soft. Let cool, then peel off the skin and cut into cubes. Place in a food processor with cumin, lemon juice, tahini and olive oil and blend until smooth. 

Toast the sesame seeds for 1-2 minutes in frying pan. Serve warm with toasted sesame seeds and drizzle of olive oil on top.  (4 servings) 

3:1 ratio

4g net carb per serving

(adapted from dietdoctor.com)

5. The “Easy prep” Pimento Cheese dip

·     5 Tbs mayonnaise

·     4 Tbs pimiento, chopped (could substitute jalapeno pepper)

·     1 tsp paprika

·     1 Tbs Dijon mustard

·     1 pinch cayenne pepper

·     4 ounces sharp cheddar cheese, shredded

·     Fresh parsley for garnish

Mix together all ingredients except parsley, chill for 1-2 hours. (4 servings)

3:1 ratio

1g net carb per serving

Happy Snacking!

-Jessica

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/

South Carolina Public Radio Interview

Listen to Laura Dority discussing the ketogenic diet and its applications with Bobbi Connor on South Carolina Public Radio's Health Focus!

http://etvradio.org/post/ketogenic-diet-hard-treat-epilepsy#stream/0