We’re blogging

As you can see, I’ve been blogging my brains out today getting this site all set up. For those of you that have been following Nora’s story, you’ve seen most of this already (all of the updates are from my past emails).

The new information is the “What does Nora Eat?” page. That’s the most frequent question that I hear, so you can look there to get answers. Mostly, the answer is “what the rest of us eat,” only in different proportions. Double Devon cream (6.6 grams of fat per tablespoon) is indispensable, along with heavy whipping cream (6 grams of fat per tablespoon). If we can load her up on fat-dense foods like that, the rest of her diet looks a lot more palatable.

And Nora is happy and healthy. She gave me a scare a few days ago, but nothing has come of it. I sent her into the kitchen to wash her hands, and she came back and announced, “I had a taste of jam and didn’t have a seizure!” My heart skipped a beat. Anders can now make his own toast, so I imagined that he had left the jam jar out, or maybe she had licked the butter knife. I followed her back to the kitchen, asking, “where did you get the jam?” Her reply: “off the floor.” Mmm, anything for jam I suppose. It could not have been much, but I made a note of it. No new seizure activity to report, thankfully.

But she really doesn’t put up a fuss about many foods. Nora gets 90% of the credit for the success of this diet, because she could make it impossible. Instead, she makes it entirely possible and it has been an amazing dose of good medicine for her.

Welcome to our world

On these pages, we hope to convey our experience with a modified version of the ketogenic diet that we are using to treat benign myoclonic epilepsy for our 3 year old daughter, Nora.

As we build this site, I expect to make 3 main pages for background and FAQs:

  • About the MKD (Modified Ketogenic Diet) as we are using it.
  • How we got here: Nora’s epilepsy story.
  • What does Nora eat? A general description of Nora’s daily diet.

In the days, weeks and months ahead, we will be adding blog posts about Nora’s experience and progress. I expect to start by cataloging a few updates that went out as emails to family and friends (I will note the date originally sent), to preserve the story and record of our journey. Everything after that will be current updates as of the time of the post.

One big lesson that we have learned is that epilepsy is an entirely individualized experience. Every person’s needs are unique as her fingerprints or DNA. This might be a road map for others, but it will not be a perfect model for anyone else. Somehow we will all do this together and completely on our own. We hope that we can offer any guidance or assistance to others that start down this road as well.

Thanks for joining us on this journey. We couldn’t do it without the support of all of our friends and family. Please leave comments and questions; we love to hear from you.