Autumn’s last seizure was Wednesday, May 30, 2012 at 9:08 a.m.
2 years – no seizures.
After having up to 100 seizures a day.
What can be said? Who do you begin to thank? How did we get here?
A diet. Prayer. And a joy-filled little girl.
It is just a great day for giving thanks and praise to each and every soul that has walked with us, prayed for us and taught us in so many ways. And the One and Only!
“Every Good Gift and and Every Perfect gift is from Above”
James 1:17
Re- Posting the video – although the subtitle needs to be changed to:
…2 years and counting!
And this was breakfast this morning – yes, Autumn actually gets that much! For all who may be new to the diet – don’t lose heart – this much watermelon will come again!!!!
On the eve of Autumn’s 2-year, seizure-free anniversary, our family certainly does not think so!
Can you imagine the joy and the life we have today that came through this organization? If you read this, and want to share in that joy – and help others share in that joy, please consider celebrating by giving $20 to help the joy continue! Your investment will reap a harvest!
Everyone of Autumn’s brothers and sisters love cereal, and it’s also her dad’s favorite nighttime snack 😉 . Because most cereals are not all that nutritious, we try to limit cereal to once a week. Almost always the number one requested item for a birthday breakfast is Cinnamon Toast Crunch…not exactly a health food! 🙂
Autumn, however, can have have cereal on any day of the week – due to this yummy chocolate cereal from The Charlie Foundation/Keto Cook created by – once again, the infamous Dawn Martenz.
You can raise the ratio by using cream instead of almond milk. We also use cream so that Autumn can add in some fruit. I have, at times, modified this recipe to make a “cinnamon toast crunch” cereal as well.
Here are the items we use in making it:
Mix ingredients as directed in recipe. We make a “10 times” batch so we have quite a bit of dough that we separate onto 3 parchment lined cookie sheets:
You need to be watchful of the taste testers:
Then place another piece of parchment paper over the dough and roll out thin :
It actually works better to roll it out on the table/counter than on the cookie sheet:
Then “score” each pan of dough into bite-size pieces:
After they are all done baking, we break the pieces up and measure all the cereal:
Then we divide that number by however number batches we made. Although we make a “10 times batch” we often divide by nine due to people taking “snitches” of the batter and losing a bit in making it. We then store each amount into its own separate plastic baggie:
We store all the bags in one container and keep it in the refrigerator….so we can just pop out a bag for breakfast…not just for birthdays…but any day!
If you have been following this blog, you may recall that we started weaning Autumn off the diet this past February. We have been reducing her diet :25 approximately every 4 weeks. Today we started once again at a new ratio, we are now down to 1.50:1. The plan is to go down to 1.25:1 in mid-June and 1:1 in early July – at that point we will be basically “low-carbing” things as she returns to a regular diet.
However, that is just “our” plan. We have no idea what will actually happen. Although I would never consider myself a pessimist, my kids have called me the most pragmatic person they know. And that pragmatic side of me says that, for now, her blood ketone levels are still too high to know for sure if she is “out of the woods” yet.
Most research on the ketogenic diet states that it is necessary for blood ketone levels to be at least at 4.0 for seizure control – although that may not be sufficient. All throughout the diet, Autumn has measured in the 7’s or higher. The monitor only goes up to 7.9 and then just reads “HI” for any higher values. We had to monitor Autumn closely when we first started the diet because she would consistently measure “HI”.
Right now, she is down to a 4.8.
So, is she not having seizures because her ketone levels are still high, or because she is actually “healed”?
Right now, we just don’t know.
So, we just keep watching and waiting, enjoying those extra grams of carbs and protein, and trusting that no matter what happens, God will use it for good, one way or another, as we keep pressing on……..although at times my palms still sweat 😉
A picture from the back porch last week…looking forward to what is ahead!
Perhaps. At least a step in the right direction for helping the symptoms.
I have friends and acquaintances – probably all of us do – who have children with Autism, ASD, seizures or a myriad of other disorders. One of those parents posted the following video/link this past week. We just finished watching it for science class today (along with a 45 minute video on the thyroid – all great stuff for even a 9-year-old!) 🙂
I thought anyone following Keto Joy would be really interested, so here is the link:
Growing up, I remember one of my mom’s favorite candy bars was a Mounds Bar, and thus it became one of mine, and thus some of my kids’ favorite…funny how that works. 🙂
There is just something about dark chocolate and coconut….yum. Well thankfully “Keto” Mounds Bars are really easy to make. There are not quite as soft and moist, but they are still yummy!
Ingredients needed: (Click “recipes” for exact measurements)
Remember you can use either stevia or truvia – whatever is your preference. The Ghiradelli chocolate has a higher fat ratio, so that may be helpful in some recipes – although this recipe is almost ALL FAT!
Put the coconut, coconut oil and vanilla in a food processor until well mixed/ground:
Then press into a small pan/container – the one shown is about a 6 x 4 :
Next, mix up the dark chocolate topping using cocoa, truvia/stevia, coconut oil and a pinch of salt:
And pour it on and over…
Cover and place in the fridge until they harden, then take them out, pile in a mound….
Yesterday was “Mom’s Day”…a day many of us moms enjoyed so many beautiful things. I personally enjoyed…
A flower garden planted by my girls…
An amazing tiramisu cake, made by another daughter(Grain free and sugar free!)
A heart-filled number of cards…
It was truly a beautiful today!
Today, Monday, is also “Mom’s Day.” The Mondays…Tuesdays..Wednesdays….that are done all year round, filled with:
Laundry…
and dishes…
and schooling…
and perhaps back to work, and back to researching the health issues, and doctor’s visits, dealing with financial shortfalls, and strained family relationships… along with the impatience, the anxiousness, the mother’s fears….and I think of all the other moms I know – Tresa, Anna, Kate, Natalie, Gerri, Christine, Dawn, Lisa……who are waking up too, to Monday, with all their issues and their kids’ issues, and I am grateful to know them…. and how today we moms will walk together – although perhaps distantly – and how they will all help encourage me – in some way or another – and all the other moms out there who I will learn from and get help from this year.
And so when I read this note yesterday from one of my sons:
“I read the popular line last night: “What can you do to promote world peace? Go home and love your family.” It immediately made me think of the way you’ve poured into each of us since day one. We’d have probably already attained world peace by now if everyone had your ability to invest, reason, and love. Thank you for your sacrifice every single day to carry on and do what you do so beautifully and well. Love you and Happy Mother’s Day, Mom!”
…and all the other kind words from my other sons and daughters, my first thought is: “How is this possible? How can he say these things? Did he, and all the other kids, forget all the times I was yelling, ugly, impatient, selfish, impossible and irrational?”
Then I think of page 13 of of Ann Voskamp’s “One Thousands Gifts” where she says,
“Why does God ask us to give thanks even when things look a failure?
…and on page 14 she says..
because “It’s yielding higher than it looks.” “The life that counts blessings discovers its yielding more than it seems.”
And so when all the years go by – 24 for the son’s words above –
I think how blessed I am to have so much help…so many other moms that encouraged me and helped me give thanks for all things… so that I might have a happy mothers’ day.
So I spray on a spritz of my favorite perfume – my gift from the kids yesterday…
and walk in it….amidst all the other stuff. …and count all those blessings…even as I put them into the washing machine, scrub them off the floor, apologizing for a wrong word or attitude and asking for forgiveness, giving thanks as I go along… and today, I get to do it all without seizures!
Until you have a health crisis in your home, you may never come across all the different dietary approaches to help heal the body that basically have their foundation in Hippocrates famous quote:
“Let food be thy medicine, and medicine be thy food.”
I started this post over a month ago, and have kept editing it and editing it because there is just so much information that I would like to present, but I have wanted to keep it as consice as possible. My goal in writing this post is to create an awareness of dietary approaches to health, and then to encourage others to pass that information along so that many may benefit, just as our family benefited from Jim and Nancy Abrahams faithfulness in getting the word out on the ketogenic diet for epilepsy.
There are thousands – if not millions – of sites you can find on the internet discussing the diets/topics I am listing below. I am just giving a brief overview (or this would be hundreds of pages long!) of the highlights of each one. There are many other great books on dietary therapies to health- these are just the books that I have come across in my own reading that I thought might be helpful to others.
To begin, I think a great place to start in an attempt to understand why the diets discussed below help the body heal, is to read the following article.
“It’s Big Science…It also promises the biggest turnaround in medical thinking in 150 years.”
I have been familiar with the “GAPS” diet for several years. Someone actually suggested it when Autumn first started to have seizures, and before we knew about the ketogenic diet. I personally feel that the Ketogenic Diet is THE DIET for epilepsy. However, the GAPS diet would certainly be one of the diets I would consider trying if I had a child that exhibited any autistic symptoms, behavioral problems or bowel issues.
The basic premise is exactly what the above article proposed – heal the gut, heal the body. This article specifically deals with Autism and the Gut:
On the GAPS protocol You heal the gut by eating bone broths, cultured dairy, fermented veggies, and staying away from grains and sugar. The GAPS diet has been instrumental in helping MANY people find good health – both physical and psychological. I have read that people who have a problem with candida and go on anti-candida diets may never really get “cured” until they heal the gut, so some find better relief doing the GAPS protocol. You can also find many sites on the internet of parents who have found that the diet brought their children back from autism.
2. Nourishing Hope for Autism, Nutrition and Diet Guide to Healthy Children
This author review the tops diets used for treating Autism and then individualizes them for each patient.
From Julie Matthews website:
There are many special diets that help children with autism, ADHD, and other childhood conditions: Gluten-free Casein-free (GFCF), Specific Carbohydrate Diet (SCD) or GAPS (Gut and Psychology Syndrome) Diet, Feingold Diet, Body Ecology Diet, Low Oxalate Diet, Low Phenols (Feingold and Failsafe) and Weston A. Price.
Though the are many effective diet choices, beginning nutritional intervention need not be overwhelming. Ten years ago, there were few choices, it was just – do diet! And, “do diet” meant do the Gluten-Free Casein-Free Diet (GFCF). Eliminating gluten (the protein in wheat) and casein (the protein in dairy) was the primary focus of diet for autism for many years and the GFCF diet has proven to be very beneficial for many children on the spectrum.
Today, additional advances in nutrition research and parent experience have resulted in the broader application of dietary strategies such as SCD and GAPS Diet and Low Oxalate Diet. Because each person has unique chemistry and underlying conditions, it’s important to identify, follow, and customize the varied approaches to meet each situation. Be sure to read my Get Started Guide.
3.Breaking the Vicious Cycle – Intestinal Health Through Diet
Another diet that is similar to the GAPS diet is the Specific Carbohydrate Diet (SCD). Just as the Ketogenic diet became better known by Jim Abrahams due to Charlie’s seizures, the SCD became more widely known after Elaine Gosstchall cured her daughter from many health problems. Elaine and her husband Herb were given an an ultimatum by their doctor; either consent to surgery to remove their daughter’s colon and attach an external bag for the collection of waste, or watch her slip into further debilitation, even death. Instead, they went to see a 92 year-old specialist, and thus began the recovery of their daughter.
The relationships between food and intestinal disorders such as Crohn’s disease, ulcerative colitis, diverticulitis, celiac disease, cystic fibrosis of the pancreas, and other forms of chronic diarrhea.
A discussion of the cycle of events occurring in the intestine of those with problems and how the Specific Carbohydrate Diet™ can break this cycle and permit the body to regain normal functioning.
I had actually brought Kendall Conrad’s Cookbook when I started ordering all our keto books, but found that it was not conducive to the the strict ketogenic diet needs to control seizures. However, for those on SCD, the recipes look amazing!
4. Digestive Health with REAL FOOD.
Aglaee Jacob discusses both the GAPS, SCD and Paleo diets in her book: Aglaee got very sick after a trip to the Peruvian jungle – with a list of symptoms that first started intermittently but then became non-stop. At one point she was limited to eating only 5 different foods! She wrote the book to help some of the millions of people who suffer and are given bad dietary advice. She focuses on make sure you are eating REAL food!
From her website:
Health begins in the gut. In addition to digestive disorders, many other health problems can stem from damage to your intestines, including migraines, skin problems, autoimmune conditions, and weight abnormalities, so tackling your digestion first is smart if you want to maximize your chances of obtaining optimal health.
Beyond simply managing your symptoms, Digestive Health with REAL Food will teach you how to address the root causes of your digestive troubles to achieve optimal digestive and overall health.
The information in Digestive Health with REAL Food will help you build your own optimal diet by identifying the best foods for your digestive system: ones that are easy to digest, anti-inflammatory, nutrient-dense, healing and low in irritants and allergens.
The nutritional protocol in this book, developed by registered dietitian Aglaée Jacob, addresses numerous digestive problems, including:
Author and scientist, Sarah Ballantyne, writes a paragraph-long list of illnesses she has suffered with, with a mile long list of of medication she was on – and has now reversed them all using the “Paleo Approach,” enjoying a life she never imagined she would have. Sarah saw 6 different doctors in 5 different cities over the course of 8 years, when finally she said, “I was never prescribed any treatment other than strong topical and low-dose oral strides. I had to figure it out on my own.” So, on goes the scientist hat and out comes the book that has been called “The Most Thoroughly Researched and Well Explained Book on Paleo & Autoimmunity.” Indeed, this book has a lot of science in it – but in a very understandable and useful way. She does discuss how her book was built “on the shoulders of giants” listing the books/dietary approaches I have mentioned above, in addition to others. If you have an autoimmune issue – you will want to have this book! Sarah’s blog is http://www.thepaleomom.com
6. The Wahls Protocol
“Like many physicians, Dr. Terry Wahls focused on treating her patients’ ailments with drugs or surgical procedures—until she was diagnosed with multiple sclerosis (MS) in 2000. Within three years, her back and stomach muscles had weakened to the point where she needed a tilt-recline wheelchair. Conventional medical treatments were failing her, and she feared that she would be bedridden for the rest of her life.
Dr. Wahls began studying the latest research on autoimmune disease and brain biology, and decided to get her vitamins, minerals, antioxidants, and essential fatty acids from the food she ate rather than pills and supplements. Dr. Wahl’s adopted the nutrient-rich paleo diet, gradually refining and integrating it into a regimen of neuromuscular stimulation. First, she walked slowly, then steadily, and then she biked eighteen miles in a single day. In November 2011, Dr. Wahls shared her remarkable recovery in a TEDx talk that immediately went viral. Now, in The Wahls Protocol, she shares the details of the protocol that allowed her to reverse many of her symptoms, get back to her life, and embark on a new mission: to share the Wahls Protocol with others suffering from the ravages of multiple sclerosis and other autoimmune conditions.”
Almost all of the above mentioned books have used the principles from the Weston A. Price Foundation and the the book Nourishing Traditions – A great resource to have on hand that discusses the best foods to eat to maintain good health.
Most of the authors from the above books faced the same issue – doctors could not identify what the problem was, and tried medicine after medicine – even brain surgery in the case of Charlie Abrahams. Whether it was Sarah not finding any answers for her mile long list of ailments with all her doctor’s, or Jim Abrahams and Elaine Gotschall not finding answers for their children, they have known that the traditional “medical world” has not been quick to use dietary therapy. This is from the SCD blog:
“Elaine began to experience a gnawing sense of disillusionment – fueled in part by her fellow researchers, failure to share her interest in integrating all of the evidence for the effects of food on intestinal health and translating it into clinical practice. She despaired of all her hard work ever being channeled into helping real people who were suffering – people whose doctors might never recommend Dr. Haas’s approach.”
Jim Abrahams once stated to me that he:
“remained convinced that it is largely up to us, the people who have lived this miracle, to continue to promote the diet. That’s how so many families learn about diet therapy and are empowered to fight for it.”
If Jim Abrahams had never taken the time to “get the word out” by making the film, “First Do No Harm,” who knows if we would have ever found relief from Autumn’s seizures. And the same can be said for Elaine getting the word out on the SCD, and Aglaee, Sarah and all the others.
Please note, We love our family physician, and although he did not know much about dietary therapies, he was certainly supportive once he saw it was working. The best situation you can be in, is to have a good relationship with a humble doctor – one who is open to consideration of new methods – even if they are not familiar with them.
So now in an effort to gain optimal health and a “healthy gut,” I have started cooking broth:
The chicken broth is almost gone…so next up is beef:
With which I make fantastic soup with – I have eaten soup almost daily for the last month!
Making yogurt and sour cream:
And fermented vegetables:
It is important not to get overwhelmed by all the information out there. Know the health issues you face and just take one step forward, and then another. Most of the books I mentioned above stated that you may feel better in a matter of weeks!
Although, I posted this video in a separate post last week, I am including it again as it fits along with this dietary discussion. If you have not seen it – you need to know what is says!
No matter what your health state is, over and over again, the top dietary recommendations are:
Cut out all refined sugars
Increase your fruits and veggies
Try to incorporate some fermented foods daily and cultured dairy
Eat quality meats
And don’t forget those all important healthy fats – coconut oil, good quality fish oil, olive oil, avocados and nuts!
I can tell you that coconut oil is the first thing taken in our house every morning!
PLEASE NOTE THAT I AM NOT RECOMMENDING ANY OF THESE DIETS IN PLACE OF THE KETOGENIC DIET FOR CONTROLLING SEIZURES. For controlling seizures, I will only say:
….we were in the midst of getting ready for our oldest son’s wedding in our back yard, that was supposed to have been on the beach of Carmel CA.
I had just returned, less than 48 hours earlier, from almost 3 weeks from being in one hospital and then another, with a still seizing Autumn and over $1000 in meds. If you ever wonder about God’s grace, watch this video from that day:
I am working on a post that gives an overview of different dietary therapies and I was going to put this video in that post; however, I think it is best to post it alone.
I know 18 minutes can seem like an eternity in our “sound bite” world, but it may be worth it to your health for every minute you watch.
Keto Joy! 
