Epilepsy

Oct 12, 2016 a super awesome post appeared on the Keto Chow subreddit: “Keto Chow for seizure control“. This is an emotional subject for my family and it was awesome to see this post.

I asked Dan if he could email me some of his experience. He was kind enough to do so. The only editing I have done is to fix some formatting issues my blog introduced. Dan wasn’t enticed in any way for his experience though I’m deeply grateful he shared.

My name is Dan.

I was in an accident almost three years ago and received a TBI (Traumatic Brain Injury). For me this includes severe memory problems and seizures. I have occasional Tonic-Clonic Seizures (AKA convulsive, grand maul) but I mostly experience Complex Partial Seizures (AKA petit mal, focal seizure, staring-spell).

With only couple of minor seizures per day, medication was seen as a good idea, but no emergency. I was put on and taken off of a slew of medications. None were very effective (reduced seizures by only 60%) and all had terrible side effects. One rendered me unable to walk, some caused worse types of seizures, all caused serious and unacceptable emotional side effects. If people knew what these did to your thinking, they would probably not give them to children. In my opinion, these are very dangerous drugs. I found that I was at a high risk of having permanent side effects from the ASD (Anti Seizure Drugs) that were worse than the seizures, as well as increased seizure activity caused by going off the ASD. My memory impairment makes it very difficult to take medication accurately, and ASD needs to be taken on a precise schedule.

This finally ended up with my seizures increasing until in August I was having a minor seizure every 8-10 minutes and near daily convulsive ones. This makes normal function impossible and is very dangerous. My wife understood how Ketogenic diet is used in Seizure control. It is a well accepted practice in children for Refractory Seizures (Seizures unresponsive to medicine). It is unpopular in adults because they tend not to stick to the diet, though it is sometimes used with success on inpatients.

I also happened to be about 80 pounds overweight, and exercise is extremely difficult, even dangerous. (I have very little balance). So I went on a ketogenic diet, and the results were immediate. I went from more than fifty seizures a day to three days without any. My occasional seizures were very brief, and very mild. I found that the anti-seizure effect is not 100% tied to ketosis itself, so I could exceed my macros a little and it still works, but if I accidentally went way over (“sugar free” restaurant food that wasn’t) I would get a long seizure 10-12 hours later. So long as I stuck to my macros I was only getting a minor seizure every few days, better than with any medication. The only side effect? In ten weeks I have lost 60 pounds.

Let’s talk about that…

My doctor says she is happy if somebody loses ten pounds when she tells them to lose weight. Nobody, not one person, has lost anywhere near what I have without surgery. For me it has been effortless. But there were real problems too. The adaption was very difficult due to my underlying symptoms (especially electrolyte imbalances), but over quick enough. Where I was running into problems was my memory. I have a very difficult time tracking my intake, remembering which food is ok, and remembering to eat. Nausea is a daily problem that sometimes makes normal meals impossible.

I was telling my wife how I wished there was Soylent for people on Keto, and she looked around and found there is. We researched several and landed on Keto Chow. We went with Keto Chow because they seemed very honest and transparent, this was not some kickstarter-vaporware, this was a product that has been developed in cooperation with the users. You can tell there is real heart behind this product.

I ordered some vanilla and read cautionary tales about mixing techniques, texture, and mouth feel. Due to nausea I am pretty sensitive about texture. I need not have worried. I measured all the ingredients into my Blendtec and set it going on low for a minute. It was an ordinary vanilla milkshake in every sense of the word. No graininess, no aftertastes. Just milkshake. I eventually ordered other flavors, I like all I’ve tried. Chocolate peanut butter and vanilla are my faves.

Where Keto Chow really shines is how it makes Keto easy. I replace 1-3 meals a day with Keto Chow, assuring that those meals are perfect on their macros, and my electrolytes are good. When I am at my worst, when I can’t remember anything for more than a minute and can’t walk without assistance, my diet is spot on. Before Keto Chow I would play salad bar russian roulette… Hmm, will this food give me a terrible seizure? Or do I not eat and let my blood sugar go all wonky? Each Keto Chow is 33% of my day’s food I don’t have to measure, but I know it’s where it needs to be.

Yesterday was my worst day in months. I had a bad fall in a doctor’s office, had to be assisted everywhere, couldn’t keep anything straight. Because of this I did three meals of Keto Chow, at the end of the day my macros were perfect, I had not once felt hungry, and I spent no valuable cognitive resources on meal planning. My worst moments are when I absolutely need my diet dialed in, and Keto Chow makes this easy. It has turned a serious liability into a stable benefit. When my diet is well controlled I not only rapidly move towards a healthy weight, and reduce seizures, but I also get more out of physical therapy, I recover from things faster, I am less of a burden on my family.

This is about quality of life.

For those that haven’t read “Why I Make Keto Chow“, my first introduction to the ketogenic diet was when our oldest son started having seizures back in 2008. After trying most of the common anticonvulsants (with no success) the neurologist sent my wife home with some information on a dietary treatment to control the seizures. He told her that if they didn’t have success with a medication soon then we would need to try a ketogenic diet. Glancing through the information he provided, my initial reaction was “holy crap, that sounds impossible!” all of the dietary restrictions and rules were more than we could handle. We would be like this family. My wife will correct me but I think medication 16 or so (she corrected me: it was 12) was the one that finally worked to control his seizures without rendering him an effective fixture. He eventually grew and we reduced and then stopped his medication (under the guidance of a neurologist) and he hasn’t had a seizure since 2009.

2009 was a long time ago, but to this day if he makes a weird noise (as boys are want to do) that sounds at all like one of the “grand mal” seizures he had; it all comes rushing back and he gets a scolding for something innocuous like popping his jaw (and freaking out his parents). It was a difficult experience. If there is anything that I could do to aid a family going through that I wouldn’t hesitate. When I read the “Keto Chow for seizure control” post to my wife, she teared up because it’s painful remembering that and thinking about others going through it. To hear that something we have made is benefitting someone so profoundly is more validation than I can handle and I get emotional too.

Yes, that’s Deron Williams in the photo. Several Jazz players (and cheerleaders) came to visit kids at Primary Children’s Hospital where my son was after his first really bad case of seizures.