One Year Seizure Free!

Milestones are always a time to celebrate and reflect. Nora experienced her last seizure 1 year ago today. In response to that seizure, we decided to move her ratio up to 3.5:1 and we seem to have found the sweet spot. Thank goodness for seizure freedom. Thank goodness for the ketogenic diet.

Thanks to Ted, my partner and the best papa that Nora could have. No one loves her more. You bought us a place of honor among the neurologists and residents at OHSU with your graphs. You helped us to think about the problem systematically while your whole heart was crushed by the weight of it all. We are a hell of a team.

Thanks to Anders for being the best big brother in the world. You have been caring and sensitive to Nora’s needs, far beyond your years while being a normal big brother to Nora in every way. If offered 3 wishes, one is always for Nora to be seizure free and done with her diet (he also wishes to fly and for a magic wand).

Thanks to Nora’s doctor, Dr. Carter Wray, at Doernbecher Pediatric Neurology at OHSU for showing up just when Nora needed you, counseling us, encouraging us, adoring Nora and keeping it real. Thanks for being on our team.

Thanks to Nora’s dietician, Karrie Stuhlsatz, for counseling me through ratios and diet management and hearing out my long winded questions and speculations. Thanks too for being on our team. When we wanted to move the ratio up after that last seizure instead of trying a new drug, you reassured me and supported that decision. I was am so grateful.

Thanks to our family and friends who have supported us all along, praised and loved us through it all, and have completely trusted and respected Nora’s diet restrictions. Thank you to our friends for being thoughtful by giving me the heads-up on picnic and party plans so that I could prepare a matching meal for Nora. Thanks for your patience as I and my gram scale have occasionally invaded your kitchen. Thank you most of all for continuing to invite us to your gatherings, even with all of our complications. Thanks for asking questions and listening to the (again) long winded answers.

Thanks to the other keto-parents out there who have blazed this trail for us and provided inspiration. We celebrate and mourn with you on your journey too. You are a new part of our family and our hearts are always with you. Thanks to the Charlie Foundation for bringing us together and giving us resources and hope.

We’ve come a long way, but it’s probably only half-way into the journey. The rule of thumb is 2-years seizure-free, then weaning will take some time. Even then, we will ease off slowly, so we might have more than one year ahead of us, and I anticipate always avoiding high-sugar foods for Nora. Thankfully, our long-term changes are healthy for every body.

We’ve overcome many hurdles and Nora has defied all of our expectations for compliance and clinical response. She’s the real star of the show, and she knows it! We are all just the supporting cast giving Nora everything she needs to shine.

Ted says:
I’ve mixed feelings.  At once sad for the memories of what was — and the possibility of relapses, however remote — and also deeply grateful for what we have now.  This year has felt like many, but at the same time it is short in the course of epilepsy.  There are many contradictions.  But one thing is true: in December of 2011, when Nora was having many seizures and there was no improvement in sight, I would have given almost anything to be here now, with a healthy, happy, spirited, seizure-free, distinctly-Nora girl.  Christy did a wonderful job thanking everyone.  I echo that.  And thanks to Christy.  Nora doesn’t yet understand what you are doing for her, but I do, and it is written into Nora’s branching path, which every day advances further to a brighter place.

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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.

10 thoughts on “One Year Seizure Free!

  1. What a great milestone to celebrate! Your family makes an amazing team and do the world of epilepsy so much good with your website (and other work behind the scenes). Congratulations!

  2. Dear Christy, Ted, Anders, and Nora,
    I saw your story shared on FB by Jenny today. It caught my eye because, coincidentally, I took a big pharmacology exam this morning that included antiseizure medications (I’m in nursing anesthesia school). The ketogenic diet was mentioned within our lectures as a way, other than medications, to control seizures for pediatrics, but wow, seeing is believing. Congratulations!!! Wishing you one more year, and forevermore, seizure free!
    Stephanie Martinson

    • Thanks Steph! So glad to hear that you learned about the keto diet! We are very aware that if Nora needs other medical treatment of any kind, we have to inform all of the hospital staff and make sure that anything she gets is in line with the diet too. I am happy that it at least gets an honorable mention in a pharmacology class! The more information out there, the better.

      And we are very aware and thankful that medications work for so many people, but it’s important to have the diet as an option. Good luck finishing up your degree–you’ll be an asset to the medical community!

    • Jenny told me that you were a nurse at the White House recently!?! Wow, a kid from Devils Lake, North Dakota went a long way! Not that I’m surprised, because you’ve always been pretty amazing. If you can, get a message to Michelle–her interest in kids’ health through diet would be a great way to get the word out about the keto diet!

  3. Thanks so much for sharing your journey. I am deeply excited for you that Nora is and has done so well. As a mum of a 4 year old with nasty epilepsy, and having done the ketogenic diet for almost a year now, I truly know how much work, love, time and damn effort you have put into this, well done!

    • Thank you Mary-Anne! I just read your latest update too. I’m happy for your family–I know the diet has been hard, and the freedom of MAD must be lovely. I try to imagine the day that we go there–both the freedom and adjusting to the lack of rigor will be mentally challenging, honestly! You are doing an amazing job for Caspian–we will keep you in our thoughts too.

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