Modified Atkins Diet for Epilepsy

Last summer, I wrote about how my son was switching to the Modified Atkins diet after nearly seven years on the Ketogenic Diet. Since it has been a year on the new diet, I wanted to share an update on how it is going, as well as a few tips and foods we’ve depended on with the new diet.

The Ketogenic Diet is a special high-fat, low-carb diet that can help control seizures for some people with epilepsy. We started on the diet soon after my son began having seizures, and after it became clear that we would need more than medications to prevent his seizures.

Keto was initially a struggle, both in terms of finding foods and ways to introduce fat into my son’s diet and the effort and logistics involved with measuring every ingredient and preparing meals separately from the meals my wife and I ate. We would bring his food with us to restaurants and, when we traveled, extended trips required a place to stay that had a kitchen. But we made it work because the diet, along with medication and a VNS, helped manage my son’s seizures. We have never been seizure-free, but we found the right balance between medication and quality of life, even if my son mostly ate the same handful of meals.

The Atkins diet is a low-carb diet from the 1970s. Similar to the idea behind keto, the idea is to limit the number of carbs. The Modified Atkins diet blends the low-carb approach with adding more fat. For my son, it opened up a new world of food, especially since the popularity of Atkins and other low-carb diets have introduced a number of products on the market that are easily available on the shelves of most grocery stores.

My son now gets a set number of net carbs a day and a minimum amount of fat that he should have, although we’re always trying to add more fat into each meal. He can have as much protein as he wants, which he demonstrates by piling up the hamburgers and hot dogs onto his plate (he’s less excited when chicken and fish are on the menu). Net carbs are calculated as total carbs minus fiber, so fiberous vegetables in a salad are a mainstay, as well, and my son hasn’t seen this amount or variety of vegetables since before keto.

When we transitioned from keto to Modified Atkins, we monitored my son closely to see if there were any changes to his seizures as well as any changes to his cognition…there are some reports of keto helping improve cognition. In both cases, we haven’t seen any meaningful changes so far. His seizure frequency and duration are the same, and we haven’t noticed any worsening in his cognition.

The most significant change that we’ve seen is his quality of life. My son was so excited to have a sandwich for lunch, just like the other kids in school, rather than the fat-heavy ice cream we usually sent him with. He can also have a small bowl of low-carb cereal for breakfast, just like his friends. And now we eat the same meals at dinner, just in different proportions.

I was wrestling over the past few years with the Ketogenic Diet as I saw my son notice how his food differed from his friends. I started questioning the value of the diet and pushing to get him off it while the doctors were convinced that it was helping him. The Modified Atkins diet feels like a step in the right direction. Even though it is still a medical diet, there are enough options that it doesn’t feel as much like a restrictive diet as keto did.

Overall, the change has been a positive experience for my son and our family. While it may not be an option for everyone, it is worth having a conversation with your doctor if you’re looking for alternatives to the ketogenic diet to help manage seizures.

If you’re on or thinking about the Modified Atkins diet, first check with your doctor. But I wanted to pass along a few items that are staples for us that have made the diet more manageable and delicious.

Catalina Crunch Cereal – There are a few low-car cereals (5g net carbs per 1/2 cup) on the market, but we’ve found Catalina Crunch to be easily available and tasty. You can find them in the cereal aisle at Whole Foods, or try a sample pack of flavors through Amazon or direct from the manufacturer.

Schmidt Oldtype 6/47 Bread – At 6g net carbs per slice, this is the bread that allows my son to have a sandwich at lunch. The taste and structure are close to that of other breads and it holds up well. The bread comes in a few varieties, as well. There are other 6/47 options like buns and bagels, but those have more net carbs. The bread is available at our local Acme grocery store.

Outer Aisle Sandwich Thins – Found in the frozen section of Whole Foods, we toast these in the oven and use these as hamburger buns. Two slices is only 2g of net carbs.

Outer Aisle Pizza Crust – Also from Outer Aisle and available in the frozen section at Whole foods is their pizza crust. When we were on keto, we made crust out of soy flour, mayonaise and egg. These are bigger (and already made) and only have 3g net carbs per crust.

Mission Carb Balance Tortilla – These are available in most grocery stores and offer a low-carb option for burritos, quesadillas, and wraps. At only 4g net carbs per tortilla, my son can have two good-sized quesadillas for dinner with cheese and meat or beans snuck inside. Pro-tip: If you slather on some mayo and then add the cheese, it’s a good way to add more fat to the meal, too.

Atkins Bars – Atkins bars are great to have for a snack. There a meal replacements, snacks, and treats, each with differing amounts of net carbs. But we usually add one of these to my son’s lunch box for school (Snickerdoodle is his favorite). In most stores, Atkins products are near the pharmacy and health section, not in the granola or Kind bar aisle.

Impastable Noodles – These are the best low carb pasta we’ve found so far. They come in different types, allowing us to mix up different recipes including traditional spaghetti or mac and cheese. I usually cook it a little longer than recommended to get a better texture, but we all eat these now on Spaghetti Sunday.

Like Everyone Else

A few weeks ago, we went to a birthday party for one of my son’s friends. It was a small gathering, done safely. We didn’t know the other family there, but they were very friendly, and the kids all got along.

Near the end of the party, we gathered together and sang “Happy Birthday.” After the birthday boy blew out the candles, the other children eagerly reached for a cupcake. My son, however, was sitting off in the corner. I walked over to him. “Hey pal, you ok?” I asked, knowing what the answer would be.

“I don’t feel included.” The words came from his mouth and punched me in the heart. It had been so long since we attended a birthday party that I forgot to make my son a keto-friendly cupcake.

I sat on the bench next to him and put my arm around him. “I’m sorry, ” I said. “I forgot.”

I told him I would make it up to him and that I would make him a cupcake as soon as we got home. But I knew it wasn’t the same thing. He’d be eating that cupcake at home, all alone, instead of surrounded by his friends, participating in what they were doing, being just like them. Right now, he wasn’t included. He was on the outside.

He’s been on the ketogenic diet for so long, and he started so young that it seems like it has always been this way. I take for granted that he’s always had a different meal than us. But, as he gets older, he’s noticing more how that makes him different. At his new school, the other kids have sandwiches and bags of chips for lunch. He brings keto ice cream and a few chips. They have cookies for dessert. He has cheese or macadamia nuts. When they have special events or cooking, he has to eat the substitute we send in. He never gets the same.

Change is on the horizon, though. After more than seven years on keto, we’re moving to a modified Atkins diet, opening a new world of food for him. The other day, we found a low-carb bread and made sandwiches for lunch. As we sat at the table, I smiled and watched him close his eyes and take a big bite out of the middle of his sandwhich. He chewed for a few seconds, then opened his eyes and looked at me, smiling. “I can have sandwiches for lunch at school, ” he said. “Just like everyone else.”

How People On Reddit Talk About Epilepsy

As a technologist, I’m fascinated about how people use social media. It’s such a vast space but people find places where they can make connections around any number of topics. Social media has fostered revolutions, saved lives, but also taken them. It enables freedom of expression but also allows an unprecedented level of hatred. Like a hammer, social media is a tool, and it’s up to humanity to use it to build or to destroy.

I read an article that described a language analysis done on comments from Reddit. Reddit is a community website that aggregates content. It also allows members to share, rate, and discuss the content. I thought it would be interesting to see how people on Reddit talked about epilepsy.

Why does it matter?

If you’re reading this post, you may have been lead to it by Twitter, Facebook, or Medium. Maybe you subscribed to the blog. In any case, you are using technology and the Internet to consume information. And there is a lot of information out there…some good, some bad, some supportive, some not. These types of analyses aren’t perfect, but they can provide some interesting insights.

I’m old enough to be able to navigate these platforms and decide what to take and what to leave. While my son is not of Internet age yet, he will be soon. And he’ll be more likely to look to social media for support. The more I know about the different systems, the abler I’ll be to guide him as he explores them.

More generally, though, these types of analyses can be helpful to see what aspects of epilepsy people are talking about. Or, not talking enough about.

What data did I look at?

For this project, I grabbed comments from March 2017 that contained the word “epilepsy“. That gave me 3,046 comments out of about 79 million (0.0038%). Literally, a drop in the bucket, but enough for a simple analysis.

Number of comments by day in March 2017

Here is how the epilepsy-related comments were distributed throughout March.

epilepsy reddit nlp google sentiment

The big spike on March 22 was partly due to a question in AskReddit. AskReddit is where posters ask and answer “questions that elicit thought-provoking discussions”. The spike was the result of responses to the question “What are you sick and tired of having to explain to people?.” I can imagine people living with epilepsy having an opinion on that question.

Which subreddits are the most active?

Next, I wanted to break down the comments by the group they were posted in. On Reddit, the groups are called “subreddits”. Those discussions helped the AskReddit subreddit lead the comment count for epilepsy-related posts. The subreddit dedicated to discussions about epilepsy came in second.

epilepsy reddit nlp google sentiment

What adjectives do people use when they talk about epilepsy?

Besides looking at simple numbers, I wanted to analyze the comments themselves. I ran them through Google’s Natural Language (NLP) API to see what I could learn. NLP takes a sample of text and breaks it down into parts of speech and sentiment.

First, I looked at the parts of speech. Here are the top adjectives most used in conjunction with the word “epilepsy.”

epilepsy reddit nlp google sentiment

What is the sentiment of the comments about epilepsy?

Next, I wanted to add the sentiment piece. The NLP looked at each comment and to try to infer if it represented a positive or negative sentiment. “I won’t let epilepsy get me down” is an example of a positive sentiment. “I have epilepsy and am depressed” expresses a negative sentiment. I wondered if the adjectives used changed depending on the sentiment of the comment, and they did.

For comments characterized as positive, words like “good”, “great”, and “best” were included.

epilepsy reddit nlp google sentiment

For negative comments, “bad”, different”, and “severe” made the list.

epilepsy reddit nlp google sentiment

I also wanted to look at the sentiment across the different groups. The chart below shows the average sentiment of the epilepsy-related comments by subreddit.

epilepsy reddit nlp google sentiment

Again, a positive score reflects an overall positive sentiment of the comments. Interestingly, the big negative score on the chart is for the subreddit “KotakuInAction.” The group relates to the “GamerGate” controversy and other gaming and Internet issues. The thread that contained the epilepsy comments related to the Eichenwald case. That was where a journalist with epilepsy was sent a seizure-inducing twitter message.

What else do people talk about when they talk about epilepsy?

Finally, Google’s algorithm also provides other topics (entities) that are discussed in text. Here are the most common entities mentioned in conjunction with epilepsy on Reddit.

epilepsy reddit nlp google sentiment

Let’s look at January through March…

Since the data was available, I ran a few of the reports for the first three months of 2017, as well, to see if anything changed.

First, here are the number of comments for January through March.

I also wanted to see how different the entities report was over the three months. There was a lot of overlap from the March chart, showing that conversations about those entities are likely normal.

Finally, I also looked at the occurrences of specific references to a handful of positive and negative terms that often come up when speaking about epilepsy.

Looking at the two charts, clearly, references to medication, side effects, and depression were often discussed in the comments on Reddit.

What’s next?

This project was a first look at using natural language processing techniques to analyze social media posts about epilepsy. There are a number of applications for such technology, and it will be interesting to explore more sites and using different algorithms and techniques. If you have any thoughts or suggestions on other ways to look at the data, please leave a comment below.

If you’re interested in doing your own analysis, you can find the source code and other information on my GitHub page. A shout-out to Sara Robinson for her article, which was a guide and huge inspiration.