Words of Wisdom Worth Repeating

With Nora’s long seizure-freedom, she has become a regular spunky 10 year old girl. We will forever be grateful for the ketogenic diet and the difference it made in her life, and the difference it made in our lives as her parents. I’m still happy to be a supportive friend to any parents who are on this journey with their own child–if you are out there, feel free to comment and we can email or talk.

Now I’m helping a family member on her journey into careful low-carb eating. Her pancreas had to be removed, and now she is diabetic and entirely dependent on insulin. It is essential to get a healthy low-carb eating plan in place.

I revisited our own blog to find some recipes and nutritional information–like leaving myself a message in a bottle! I’m baking a version of the Blueberry Almond Muffins for a healthy on-the-go snack. I will do a lot of baking and freeze lots of low-carb treats!

As I was looking through recipes, I came across this post by Ted: Lessons Learned. Just, wow. Practical tips, plus words of wisdom on navigating the marathon of epilepsy. Marathon makes it sound a little too easy (not that I’m ever running a marathon, sounds hard to me). More like a marathon with archers and club-weilding trolls jumping out of the bushes randomly. They may knock you down, but you get up and keep on moving. If you don’t read the full post, this is the pearl of wisdom for all of us:

It’s not “hard.”  It is different.  If you think the ketogenic diet might help your child, don’t accept any statement that the diet is “hard” as a reason for not trying it.  I wouldn’t say the diet is hard.  Epilepsy is hard.  The diet is a tool that may improve your child’s quality of life and development.  (Remember that if your child has failed two anti-epileptic drugs, the diet is statistically more likely to help than a trial on a third drug. Also, certain epilepsies respond particularly well to the diet.) However, the diet does require some changes to your thinking and expectations.  Once you get your routines down and everyone gets a few months to adjust, the diet is not significantly harder than having other diet restrictions.  Just different.

That is a beautiful, resilient frame of mind for any life challenge. Thank you, Ted. I can tell you in person that you are amazing, but let’s all take a public moment to recognize your amazingness.

We are happy to be a resource for parents on this journey. Leave a comment and we can converse here, or we can be in touch by email.

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About Christy Anderson Brekken

In no particular order... Instructor and Researcher, Department of Applied Economics, Oregon State University. Educational background: University of MN Law School, 2005. MS in Ag and Resource Economics, Oregon State University, 2011. Teaches: Agricultural Law, Environmental Law. Mother: brilliant 9 year old boy; brilliant 6 year old girl with benign myoclonic epilepsy on a modified ketogenic diet therapy. Married to: Ted Brekken, OSU Department of Electrical Engineering. Ride: Xtra-cycle Edgerunner with kid seat; 400-pound cargo capacity. Grew up: Devils Lake, ND. Lived in: Minneapolis/St. Paul, MN, Pohang, South Korea, Trondheim, Norway, Corvallis, OR. Interests: Cooking, knitting, eating, yoga, laughing, hiking, traveling, staying sane.

8 thoughts on “Words of Wisdom Worth Repeating

  1. I’m still out here! I found your blog a couple of months ago and it helped me tremendously. My daughter was diagnosed with Lennox-gastaut Syndrome last year. She has been struggling with intractable epilepsy for the past 4 years. We just started her on MAD about 3 months ago. Earlier on in her diagnosis, we had tried MAD but looking back, I made so many errors and it wasn’t very successful. I was working up the courage to just try diet therapy again and I found your blog and it gave me the confidence and courage to go for it! She was having almost nonstop atypical absence seizures throughout the afternoon. I’m so thankful to say that they have almost disappeared. She still has some rough days here and there but they much fewer and in between these days. We just recently weaned off of a medication (onfi) that we have wanted to wean off of for 3 years but never got the courage to until now so, I just wanted to say thank you so much for posting all that you did and that it wasn’t a fruitless effort! It made a difference in our life!

    • Hi Jeana, thanks for reaching out, we always love to hear stories of other parents who are on this journey. Lennox-gastaut is a tough one, it’s fantastic that the diet is working so well that you can wean off medication! All of our best wishes to you. You are doing an amazing job for your daughter. We know how much time, energy, effort, and stress go into the diet. Take care of yourself and enjoy every minute with your little girl!

      Christy

  2. I would love to correspond with you by email. We have seen our 6 year old’s diagnosis change from typical childhood absence epilepsy to a complete unknown with every type of seizure type in spite of all medications. We just started the MAD and saw immediate decrease in daily seizures but she is now having more severe clusters of seizures that get out of control very quickly. Our life is upside down because everyday looks totally different. There seems to be no rhyme or reason to any of this. Any suggestions or encouragement would be so appreciated. I pray we can gain some traction in the right direction soon.

    Blessings,
    K

    • Hi Kimberly, I will be in touch via email. I’m glad that you have seen some changes with MAD, so let’s talk more.

      Christy

  3. Hi Christy,

    I wanted to add myself to the long list of people who are thankful for this website you’ve created. My daughter (now almost 3) was having up to 100 seizures a day (3 neurologists have each felt that its Lennox Gastaut) and on New Years Day of this year, I told our neurologist I wanted to try it he ketogenic diet. Just like that, we started. But being the holiday, most of the specialists were off and I was on my own for a little while so I turned to the internet and found this page. I am so thankful I did. I read everything you posted! Long story short, we’ve been able to wean meds and today, we celebrated 4 months seizure free!

    Thank you, thank you, thank you!!

    I’d love to email you – if you have the chance, send me a message.

    Maggie

    • Hi Maggie, your story fills my heart! Thanks for reaching out and letting us know how well your daughter is doing on the diet–weaned meds and 4 months seizure free! Amazing. Other families will be inspired too. It really takes a community because it helps so much to feel like other people are on this journey with you. You are not alone.

      I’ll send you an email!
      Christy

  4. Hello, we had our Keto admission week this week and it’s been rough all around to say the least. I found your blog about two weeks ago and it gave me so much hope. This is my first time visiting since we started the diet and I would LOVE to connect with you all. My husband and I are STRUGGLING because my 4 yo son is refusing most meals. Also, I am shocked at how tiny the meals are and I feel sooo bad giving him what turns out to be about 2-4 tablespoons of food (other than the cream) each meal. My son’s on a 4:1, 300 calorie per meal plan. Please reach out ti me by email.

    • Hi Lakishab, I will send you an email this morning! Your experience is totally normal, and it is a struggle. But you will get through it! Christy

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