This page provides resources we have found to be helpful in our Keto-Diet journey.
The Charlie Foundation
This is THE number one resource! Jim and Nancy Abrahams started The Charlie Foundation after their son, Charlie, having gone through multiple drug therapies and brain surgery, finally found a cure with the Ketogenic diet. This site has a wealth of information. You will want to read the section on “Keto Kids” as it gives amazing stories on how the diet has helped so many (http://www.charliefoundation.org/who-we-are/who-2/read-keto-stories). There is also a forum where you are able to ask any questions you may have. Our family is indebted to everyone associated with this organization.
You will find so so so much help with recipes here – check it out – now!: https://charliefoundation.org/keto-recipes/
Ketogenic Diets Treatments For Epilepsy and Other Disorders
Fifth edition Eric H. Kossoff MD John M. Freeman, MD Zahava Turner, RD James E. Rubenstein, MD
This is considered the ” Ketogenic Diet Bible.” Following are quotes from the back cover:
“It will end up being the most well-read book you own and every keto home should have one. My copy went everywhere with me when Matthew was on the diet and I can’t recommend it highly enough.” Emma Williams, CEO/Founder, Mathew’s Friends Charity Dietary Treatments for Epilepsy, GLOBAL;Director, Matthew’s Friends Clinic Ltd. for Ketogenic Dietary Therapies
“If we would had had the information in this book fifteen months earlier a vast majority of Charlie’s $100,000 of medical, surgical, and drug treatment would not have been necessary, a majority of Charlie’s seizures would not have occurred.” Jim Abrahams, Director, The Charlie Foundation to Help Cure Pediatric Epilepsy
The Keto CookBook
Dawn Marie Martenz and Laura Cramp, RD
We were so incredibly blessed by the fact that this book had come out just before Autumn started her seizures. We lived in this book -as the cover clearly shows! I had a chance to meet Dawn, another keto-kid mom, at the 3rd International Symposium: Dietary Therapy for the Treatment of Epilepsy and Other Neurological Disorders in September of 2012. She was faithfully serving up some of her amazing recipes. I thanked her for all her aching hours in the kitchen that it took to put this book together! All recipes in this book are 4:1 ratio.
From the back cover:
“..outstanding cookbook that will be among the greatest assets of any family facing the dilemma of using dietary therapy to treat their child’s epilepsy. My hat is off to these authors, and those families, for the fantastic efforts – and results – that come with this work.” Phillip L. Pearl MD, Chief, Division of Child Neurology, Children’s National Medical Center.
Dawn also has a website/blog – be sure to check it out! It has so much good information.
Keto Kid: Helping your child succeed on the Ketogenic Diet
Deborah Snyder, DO
This title says it all. Deborah is a family physician and a mother of a “once” keto-kid. Thankfully he has been seizure-free since 2005. Written in 2007 this book was probably one of the first of its kind in actually giving pictures, recipes and resources all by a mom that lived through it. When I was making a recipe in the book and had a question, I found her office phone number. I left a message with her staff and she took the time to call me back so we could make those Caramel apple muffins! It was a pleasure to meet her also at the September 2012 Symposium where she is still helping others succeed on the diet. All recipes ratios in this book are 3:1
From the back cover:
Keto Kid…is an indispensable resource for families embarking on this challenging, but effective, medical treatment.
Ketogenic Diet Parents Guide and Gram Scale
The Charlie Foundation
You cannot do the diet without a gram scale and this one, in our minds, is perfect and is very reasonably priced. It comes with the book and optional spatulas – which you will definitely want to have – they are so helpful. An important note here; several months after starting the diet, I thought that perhaps we should order a back-up scale in case something were to happen because, as I stated, you cannot make anything without a scale. I was so glad I did because the night before I was to leave for the 2012 Third International Symposium, we were making dinner and the scale somehow fell off the counter and shattered! There would have been no way I could have attended that conference had we not had that back-up scale. Click here for ordering information: http://www.charliefoundation.org/resources/keto-supplies.html
We cannot imagine how anyone ever did this diet without this amazing tool developed by Beth Zupec-Kania of The Charlie Foundation. This tool lets you create all your meals to your required ratios, calorie, fat, protein and carb requirements. You must be working with a registered dietician to use it. Once you are registered, creating new meals is so simple!
Precision Extra Blood/Glucose Monitor
We found this monitor to be invaluable. As some of you reading this may know, testing ketones with urine ketone strips does not really give an accurate reading as to what blood ketones actually are. There were times when Autumn looked flushed or complained of a stomach ache. We would then test her and, more often than not, she would be registering in the high 7’s or even “HI” – meaning too high for the monitor to measure. This of course was critical to know, and after a few months we were able to determine that her 4:1 ratio was too high and she was becoming too ketotic – which can cause other problems, including seizures – and therefore we slowly adjusted her ratio downward… and we continue to do so. We would consider this an essential item to have when starting the diet. However, we will add that each blood testing strip is a $5 so it can be quite expensive. Yet you really have to weigh the cost/benefit ratio, and we think the benefit outweighs the cost. Perhaps you could find a friend or relative that might “sponsor” your test strips. 🙂 Although we have no experience with it, someone once posted on the Charlie Foundation forum that there is a cheaper monitor called Nova Max Plus. Something to consider.
OK, This super food needs a post all of its own! For now we will say that we believe coconut oil is a main key to the success of the diet. If you watched the video, Tresa, the mom who brought her non-stop seizing son back to normal health, still has her son take it every morning. I am sure the same will be true for Autumn. In fact everyone in our home has started taking it daily. Look for an upcoming post on all the benefits of this health building oil and some advisory notes from The Charlie Foundation. Nutiva is the brand we started with, and once you start with a specific product on the diet, you typically don’t change if there are no problems! Another great brand would be Tropical Traditions.
We saw these this past summer on the Charlie Foundation Facebook page and have been buying them ever since! Autumn makes her own flavored freeze pops with water and stevia drops and enjoys a nice frozen treat along with her brothers and sisters. She loves them! These are a great product to have on hand for anyone who enjoys serving healthy treats – making your own yummy frozen treats without any added dyes or unwanted sugars. Click here for their webpage: http://www.zipzicles.com/index.html
SweetLeaf Liquid Stevia Flavored Drops
We use these constantly! Making “soda,” chocolate milk, ice cream shakes, pudding ,chocolate cereal, zipzicles, dreamsicles, the list goes on! These bottles are a bit pricey, running anywhere between $7-$9 a bottle (perhaps you can find another family/friend sponsor ;), but you typically only use a few drops at a time, so they last quite a while.
Obviously glucose – in any form – sugar, maple syrup, honey, etc…are not allowed on the ketogenic diet. With all of the studies linking aspartame(nutrasweet)to so many health problems and also Splenda, we chose to avoid any recipes using them. For what we know at this point in time, stevia seems to be the number one safest sweetener to use. Click here to read about stevia. It is SUPER sweet – you only need a smidge to make something sweet – too much will make whatever it is you are making bitter so use with great care! Stevia has also been paired with erythritol to make a more usable form for recipes. Click here to read all about Erythritol. In most of the recipes we post, it will state to sweeten with your choice of sweetener – we basically use 1 of the following products:
When we first started the diet, the THM brand did not exist, it just came out this year (2014). It is non-gmo and organic. I feel that this is a much more pure product than Truvia. It is sweeter than Truvia so I am still trying to work out our recipes to adjust for the taste. The THM brand is not found in stores but you can order it here.
Macadamia Nut Butter
Macadamia Nut butter is a staple on the ketogenic diet! It is a perfect 4:1 food so it is incorporated in many of the recipes. It typically cannot be found in stores and the best place we have found to oder is Living Tree community. They can run out of stock quickly so I would advise to order plenty when it is in stock!
Hormel makes a brand of nitrates/nitritesBHT- free bacon and lunch meat. Salami “sandwiches” are one of Autumn favorites. I should also add the Oscar Mayer also makes a brand of all beef, nitrate/nitrite/BHT- free hot dogs. These items are also listed in the Keto-calculator, which leads to the next item…..
Vitamin and Carnitine Supplement Information
(Click on Title to see post)
Suggested Laboratory Tests For Ketogenic Diet
Once again, this is posted as a general guideline for testing. Please be working with your doctor/dietitian to be covering your needs!
Baseline lab draw, then after 3 months and then every 6 months:
Comprehensive Metabolic panel
CBC with Differential
Betahydroxbutarate (if you are testing with your own monitor, this may not be necessary)
Carnitine, Free, and Total
If on meds, Anticonvulsant medication levels
Check with Dietitian/Dr. on: Acylcarnitine Profile, Quantitative
Vitamin B12, folate
Iron Saturation/Binding Panel
Notes on Autumn’s Labs:
Carnitine levels were discussed extensively in the Vitamin/supplement page:
Make sure to give a Vitamin D supplement, especially if you live in the northern part of the country.
Autumn’s neutrophil levels and platelets have tended to run on the low side on the diet. Some research literature suggests that that is a side effect of the diet. We were quite concerned so we did take her to see a pediatric hematologist, and although he did not know why, he felt the diet was probably causing the lower levels. Her over health has been excellent so he was not concerned.
We always kept an eye on the TC02 and Anion gap as that was an indeiation of acidity in the body. When those numbers were off, we made sure Autumn was drinking baking soda daily to bring the acidity down.
2 thoughts on “Resources”
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Thank you for these resources Ann! Since I am not yet working with a dietician, I have found the MyFitnessPal to be extremely valuable for meauring macros. You do have to know your grams and ratios and goals beforehand. The Diary has a UPC scanner and a deep database for organic foods. As with most of the keto resources available, a person must set aside the dicussion of keto for weight loss vs. seizures as the ratios are different. In the end, this greatly reduced my stress and learning curve measuring everything! Yeah God!