The Ripple Effect

3/18/19

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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.


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

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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.


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!

http://www.postandcourier.com/20160620/160629977/mount-pleasant-foundation-launches-to-help-epileptic-infants-through-diet-regimen

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