On May 30, 2012, I was recording, as I had grown accustomed to doing every day, the time of Autumn’s seizures:
Little did I know at the moment I wrote 9:08, that would be the last seizure I would record…for 5 years…and counting!
You can just imagine how many times the phrase “Has she had one yet?” was said during the hours, days and weeks that followed.
We went from this nightmare:
To this dream:
None of this would have happened without these people: Kate – Mom of 2 autistic boys, who introduced me to Tresa, mom to a son with unrelenting seizures, who then introduced me to an amazing dietitian, Christine (who I still don’t have a picture for!).
And she introduced me to this incredible organization and these amazing resources:
All this to say, is that none of this would have been possible if all these people had not fortified our family with their knowledge, time and willingness to help. These were complete strangers. We were in desperate need. And because of their help, Autumn was cured.
We started this blog to encourage others walking down this same path, and thankfully we have been able to do just that throughout these past 5 years.
In an effort to continue on the theme of fortifying others, we have started a new blog, specifically geared towards moms, called, “Forti–fy”.
The goal is the same: encouraging others, by others who have walked along life’s ways and are willing to take time out to fortify those who are in need.
Today we celebrate all those who picked up the phone, sent an email, wrote a book and started an organization – all those who fortified us – and we give thanks, that is immeasurable, to each and every one of you!
(And in all honesty, we’ll probably have some cake and ice cream! 😉 )
The last few days have been all a buzz in “busyness” and excitement over 4H projects and some of the girls getting ready to leave with Dad on a trip to California to visit family.
The truth is I, unfortunately, have been busy with fear.
I hate living there. But I have to be honest.
Debbie Synder, the author of “Keto Kid”, once asked Dr. Freeman the question, “How long will it take before I don’t worry any more?” His answer, “When you are 76.”
I’m sure it will be 106 for me.
Autumn has had ear pain for several weeks, and all my usual remedies that typically work, didn’t fix it. So this past Monday found us in the doctor’s office.
“I am pretty sure I see some pus behind the ear drum,” says he. And then comes the RX for an antibiotic.
In my mind I am thinking, “If she wasn’t getting on a plane in 3 days, I would just try to ride this out. But she is getting on a plane, and she could be in excruciating pain if that infection continues. What is worse, the treatment or the pain.”
For some of you reading this, you won’t understand what is the big deal about putting your kid on antibiotic. I am not against antibiotics. I am grateful they exist.
The issue is living life after seizures and being worried that something will set them off again.
With all the research about the microbiome and gut health affecting brain health…as a past seizure mom…it makes you worried. In addition to that, the flight times are a bit crazy and will yield very little sleep. And of course with all the family gatherings there will be lots of activity and lots of great food – all kinds of great wonderful favorites and treats to eat while laughing and hanging out with her cousins. But she will need self-control…that antibiotic will be messing with her gut… and if she’s eating the wrong food… and perhaps not getting enough sleep…. could be a recipe for disaster…and on… and on… and on.
I wanted her to be able to go and just enjoy the trip. She hasn’t been out to see family for almost 6 years.
I didn’t want her to be worried about anything.
But she knows mom is worried.
This is not the way I wanted it to be.
“Wanting things your way — can destroy any way at all.”*
And so I wait. I just have to wait. I have to wait for 10 days until they are all back home. With me. (Of course then they will be safe, right?!)
“Waiting can feel like an insane asylum of its own.”
Yes, I am living there today. I want the answer now! “Is she going to be ok?!”
“He who is hurried by worry, delays the comfort of God.
I am literally exhausted today by worry…Why can’t I just rest in that comfort?
“We can simply want our situation solved — when God simply wants to be our answer. And the best situation — is always what makes God your best hope.”
For those of you who pray, I would covet those prayers for peace and protection right now. I am not afraid to ask.
One thing I know for sure, I know her dad will keep her close and take the greatest care of her.
Well, the 4-H Summer 2015 Judging was yesterday and here are some of the results:
Grand Champion for Autumn’s Keto Joy display board and brochure!
The judge told her several times that she really needed to enter her project into any and all science fairs that she could. We will look into that. This award really goes to everyone who has ever helped anyone with this diet. I can’t imagine this day even being possible without that help. This is where we once were:
Champion for Consumer Clothing
Champion for Fashion Review for her division, Reserve Champion overall; Sister, Promise, received Reserved Champion for her division.
Champion for Sewing:
None of this would have been possible without our beautiful sewing helper over the years, the amazing, Leah!
Promise, took Grand Champion for her Cake:
Promise really owes her success to the help of big sister, Rebekah. Rebekah missed judging this year as she went out to help out her big brother, and sister-in-law, with child care for Max and several of their foster children. She has been busy building forts, playing games, doing art projects and cooking in the kitchen with them! (I can only show 1/2 the picture due to privacy laws).
Kristen, took Grand Champion for all Needlework!
Kristen’s cards are Brazilian embroidered with beading. Brazilian embroidery is a rarity today and we were so blessed by some wonderful ladies from the embroidery guild that put on FREE classes at our local library in the summer. The girls started the classes several years ago and Kristen really progressed with the help of this dear, sweet 80 + -year-old member, Betty. The girls and I had presented a picture frame and poem to her last year to thank her for all her help!
The blessing of investment. Oh, how we have been SO blessed by SO many who have been willing to invest their time, talent and resources to help us…
That is the message Autumn is proclaiming about the Ketogenic Diet, for one of her 4-H projects this year.
In an effort to create awareness of using the Ketogenic diet as a treatment option for seizures, Autumn has created a brochure that she can hand out to people at our local county fair. She has also distributed the brochures to local doctors in our area to help inform them on this treatment option.
Once the fair is over, we will be moving on to our next project of organizing our website with a few updates. One being a “Read Me First” page to let people know what to expect the first few weeks of the diet. We have found that most people who contact us have the same initial struggles and it would be helpful for them to have a quick “HELP!” reference page. Secondly, we need to put the recipes in an easier-to -find format. We want to do whatever we can to help people know that although the diet may be hard….it is not TOO hard! Because life without seizures is certainly a lot easier that life with them!
That was the constant phrase whispered in our household about a half-hour after I recorded Autumn’s seizure at 9:08 a.m, May 30, 2012.
Again and again, throughout the day, brother to sister, sister to brother, brother to mother, father to mother…”Has she had one yet?”
No, not yet.
After one hour, then two, then three.
No, not yet.
The phone calls and the emails kept coming, all with the same question: “Has she had one yet?”
Although we did not want it…and hoped it would not happen…we were all still waiting for it to happen.
A day passes, then another day, then a week, and then a month.
The question then became, “How long has it been since she has had one?”
Two months. Six months. Ten months.
One Year. No, she still has not had one yet.
Another year later on the diet, still seizure-free.
The next question everyone started to ask: “When will she come off the diet?”
The decision is made, after 2 years on the diet, Autumn is weaned off.
Then the conversation changed to, “Has she had “anything” happen yet?”
Well yes, she has.
She has learned to be relentless, committed and determined to a goal. She has learned self-discipline and self-denial. She has learned great empathy for kids who have physical struggles as she remembers what it felt like to collapse in the middle of a grocery aisle, in church, on a playground among friends – sometimes as often as every 5 minutes. She has learned many cooking skills and loves being in the kitchen. She know hows to do a lot with whipping cream, butter, egg whites and macadamia nut butter. She knows coconut oil will be her life-long friend!
She knows that somethings are hard but reap a great reward.
We urge anyone who is considering the diet to please NOT be overwhelmed with the difficulty of the diet, but rather be overwhelmed with the possibilities and blessings of the diet.
Start, and you can begin reaping a harvest. This is not just a Ketogenic Diet principle, it is a life principle.
Tomorrow at 9:08 a.m. we will (hopefully!) be celebrating a wonderful testimony – that “she has NOT had one yet”, a sentiment captured well in a Journal Gazette headline from last year:
Leaving Seizures Behind!
“Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.” James 1
KetoJoy has a Facebook page, but for any of you who are not on Facebook, I thought I would post this article here:
The Cure for Brain Diseases Is in Your Gut
Researchers are just now starting to link inflammation in your gut with some of the most deadly and debilitating diseases we have.
Why are we making such little progress in our attempts to uncover the causes of various forms of brain degeneration? These days we frequently hear about breakthroughs in our understanding of diseases like cancer, heart disease, diabetes, and arthritis, but when the discussion turns to the brain, there seems to be very little news.
Medical research continues to operate with a reductionist mentality. The human body is looked upon as simply a compilation of various parts and systems, and each of these is looked upon as functioning independent of the others.
Many attribute the tenants of reductionism to the 17th-century French philosopher and mathematician Renée Decartes, who, in 1637, proposed that the world and all living beings were basically like machines, made up of clockwork mechanisms. In his Discourses, he argued that animate beings could be taken apart, studied, and then reassembled to gain a better perspective as to the meaning of the larger picture.
And so it is that, by and large, research endeavors attempting to understand what causes the brain to degenerate in conditions like Parkinson’s disease or ALS focus on the nervous system. These are devastating conditions for which modern medicine offers up no cure. And it may well be that clinging to this reductionist approach—one that sees the brain and its myriad diseases as existing apart from the rest of the body—underlies our failure to uncover the causes and therefore treatments for some of our most feared maladies.
The counter to this pervasive reductionist mentality is the notion of holism. Holism celebrates the panorama of interrelationships between various body parts and systems and embraces the notion that each of these seemingly disparate parts actually nurtures the others.
Microscopic bacteria living within us may be charting our brain’s destiny. Here’s another way of looking at it. If a football team is unable to gain yardage, a reductionist perspective would focus exclusively on the quarterback. A holistic perspective, on the other hand, takes a step back and looks at the entire team. It recognizes, for example, that the offensive line plays an important role by protecting the quarterback and giving him time to execute the play while the running backs and receivers also play crucial roles in determining a positive outcome.
Parkinson’s disease is the world’s second-most common neurodegenerative condition. By the year 2030, it’s predicted that the global burden of this disease will affect nearly 10 million people. Unfortunately, researchers remain almost exclusively focused on the quarterback with countless millions of dollars dedicated to “brain research” in an attempt to unravel the mystery of this condition.
Fortunately, vanguard researchers are now recognizing the merits of a more holistic approach. Take researchers at Rush University Medical Center, for one. They’ve begun publishing data demonstrating the significant bowel issues associated with Parkinson’s disease that may actually have a role in its cause.
Dr. Christopher B. Forsyth and his team have recently demonstrated significant gut permeability, more commonly referred to as “leaky gut” in Parkinson’s patients. Their research has further revealed that this increase in gut leakiness enhances inflammation as well as the production of a unique protein—alpha-synuclein—both of which are characteristic of this disease.
This is beyond groundbreaking, it is iconoclastic in that it represents a break from the long-held mentality that brain disease must arise in the brain. ALS affects as many as 30,000 in the United States, with 5,000 new cases being diagnosed each year. While considerably less common than Parkinson’s disease, ALS is almost uniformly fatal.
And despite the sudden increase in funding for ALS research resulting from the “ice bucket challenge,” again, it may well be that we are simply looking in the wrong place.
In research headed by Dr. Rongzhen Zhang at the University of California, San Francisco, he and his team discovered that, like the Parkinson’s research had revealed, in ALS there is also an increase in the leakiness of the gut. And again, like in Parkinson’s, their research revealed that this mechanism caused a robust increase in inflammation, a mechanism that has long been known to be associated with ALS.
These are but two examples of a welcomed change in mentality as it relates to medical research. Inflammation, as a mechanism, is thought to underlie virtually every degenerative condition that humans experience—including Alzheimer’s disease, coronary artery disease, diabetes, and even cancer. And it has become clear that the integrity of the lining of the gut plays a fundamental role in determining the degree of inflammation that the human body experiences.
One of the most important elements involved in maintenance of gut wall integrity is the degree of balance and diversity of the various organisms that live within the gut. These organisms and their genetic material are collectively referred to as the human microbiome.
The microbiome is tasked with shoring up the gut lining and therefore reducing permeability. This helps to reduce inflammation in human physiology. When the gut bacteria are altered by any number of events—including overusage of antibiotics, exposure to environmental toxins, and even inappropriate food choices—the integrity of the gut lining can be challenged.
So the dots are being connected. As researchers break the bonds of reductionism and venture forth looking outside of the brain, exciting information is being revealed that may well pave the way to understanding—and possibly curing—devastating neurological disorders. As it turns out, we are just beginning to understand how critical a role is played by the gut bacteria in terms of virtually every aspect of human health and disease. Indeed, it’s a very humbling notion to recognize that microscopic bacteria living within us may be charting our brain’s destiny.
Ironically, Decartes himself may have been first to recognize the importance of the “gut-brain connection” when he wrote this: “Even the mind depends so much on temperament and the disposition of one’s bodily organs that, if it is possible to find a way to make people generally more wise and more skilful than they have been in the past, I believe that we should look for it in medicine. It is true that medicine as it is currently practiced contains little of much use.”
Upon digging through one of our freezers the other day, I noticed we had lots of frozen strawberries. It was actually warm outside on that day – well, above 40 – so I felt like drinking something icy. I guess after you have had ice outside for 6 months, you miss it! 😉 So, I took a couple handfuls of those frozen vine-ripened berries from last summer and threw them in a blender with a little lemon juice, a bit of water and a few drops of liquid stevia – yum!
Of course, then everyone else wanted some. 🙂
Autumn then pulled out some of our Zipzicles packages and said, “Hey mom, may I make a batch of that strawberry stuff for some zipzicles?”
And so we did:
In one batch, we added some yogurt for a little extra protein 🙂
This is not so much a keto-treat as it is a great low-carb alternative to the store-bought frozen pops. However, when Autumn was on the diet, she would make frozen Zipzicles using water and a few drops of flavored stevia – she loved them! You can purchase liquid stevia drops in LOTS of different flavors:
They were a great treat she could enjoy while everyone else might be having traditional “Mr. Freeze/Ice Pops.” Even now, being off her diet, she still loves to make them in the summer!