A Quiet Anniversary

April 24 2017 marked Nora’s 5 year seizure free anniversary.  We didn’t celebrate.  Just a little high-five and the knowledge that life goes on, more challenges lay ahead, and an appreciation for moments of simple happiness.

Nora’s period of seizures lasted only about 18 months total.  From a few tonic-clonics in the fall of 2010 to a horrendous period of myoclonics in the fall of 2011 to eventually getting her seizure free in the spring of 2012.  I estimate she had something like 10 tonic clonic seizures, but she had at least 1,000 myoclonics, and probably several thousand more that we didn’t document.

On one hand 18 months doesn’t sound long, but anyone that lives with epilepsy knows it brings life to a crawl.  You are always on guard, always waiting for the next seizure to come out of the blue sky.  The fall of 2011 felt like a lifetime to me.

Nora doesn’t really remember any of it.  She asks what the seizures were like.  She knows that her diet and a period of seizures are part of her identity, but she does not remember.

I can see now that we have been unlucky and lucky.  Nora was unlucky to have to deal with seizures.  She was unlucky to have epilepsy.  Unlucky to have a nasty epilepsy.  Unlucky to have a refractory epilepsy.

But we were lucky that the ketogenic diet worked so well.  We were lucky to pull her back from the edge.  We were lucky to have the dedication and resources to apply the diet strictly and completely.

My heart breaks for people still looking for answers; still looking for their good luck after the bad luck.  Please hang in there.  Please keep going.  Things will get better.

Nora is doing well.  She is a very normal kid.  She attends a dual language school (English/Spanish).  She likes math when phrased as silly word problems I challenge her with when we hang clothes together, but can get frustrated with the notation and worksheets at school.  She has many good friends.  She loves to dance and perform.  She has very good pitch when singing, even though she hasn’t had any voice training.  She plays piano, reluctantly.  She listens to countless audio books.  She has grown tall and lean and — surprising to us — recently shown running aptitude: she has a runner’s gait.

Her diet is still restricted, but only a little.  Our only remaining rules are that she not have any refined sugar (no soda, no candy), limited bread, and that any fruit be balanced with a roughly equal amount of cheese or nuts (by volume).

We’ve actually gone out for gelato a few times this summer.  When I first had the idea for it a few weeks ago, I checked with Christy to see if she felt comfortable with it.  When we agreed, I suggested it to both kids.  Nora was ambivalent, and responded with “but we’re out of my ice cream,” referring to the coconut ice cream she was anticipating that we would bring with for her to have while everyone else had gelato.  I told her “no, you get gelato too.”  Those little moments are nice.  She licked her bowl clean.

She’s waited patiently for five years.

(A few days later one evening she suggested with as much casual indifference she could manage “Maybe we can go downtown and have dinner and then have gelato.  If you want.”)

I will always be grateful for how Nora has embraced the diet’s role in her health.  She is so responsible and so thoughtful about it.  To our credit I think we have always been very open with Nora about the benefits and challenges of the diet, so that we can sympathize with her when she is frustrated, and celebrate with her when she gets to exchange Halloween candy for toys.

Practically speaking, Nora still has the same breakfasts and lunches as she has for years.  Breakfast is our special granola (Nora’s MAD About Granola) with half and half.  Lunch is Mission low-carb tortilla roll-ups with turkey and cream cheese, some nuts or cheese, and some fruit.  Dinner is very often Mission tortilla quesadillas with cheddar cheese and avocado and carrots.  Her main treat is Coconut Bliss chocolate bars and Coconut Secret coconut bars.

For now, I am thankful for these routines, and this quiet anniversary.

(P.S. As I write this, Nora and Anders are on the trampoline.  It’s 9:00 PM on a dusky warm spring night.  Anders is explaining to Nora how evolution works, and using Nora’s epilepsy as an example of mutations.)

 

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10 thoughts on “A Quiet Anniversary

  1. Thanks for posting! I check back every so often to see how Nora is doing, congrats on the 5 years. We are 3 months shy of our daughter’s 1 year seizure free anniversary, and finally the future seems bright. Your words about time crawling during the months of endless seizures ring sooo true, I think back during that time for us and am so very grateful for where we are today. Our little Klaire will be medication free in a few months, and we have worked our way up from 10 carbs a day, to 15, which she is absolutely loving. Nora’s story was an inspiration to us when we first started our Keto/Mad journey, and still is an inspiration today!

  2. Hearing your daughter’s seizure free story, makes me hope for light at the end of the tunnel. My daughter has had nocturnal seizures for over a year now (she is 5 1/2). There is no known cause. I am lucky, in that she has had no health problems or delays, but the seizures sometimes last over 8 minutes, and are terrifying. Im so happy for you and your daughter! Thanks for reinforcing the importance of what food goes in the body with your story!

    • Grace,

      Yes, seizures are absolutely no fun. I found them quite traumatic to witness. If your daughter is doing well otherwise, that is a good sign! Is she on any treatments or medication?

      Hang in there. It will get better.

      Ted

      • She is on Levetiracetam, which they had put her on and increased since the beginning. There were time when we would go enough weeks without one to think it was better, but they have come back longer than ever and i just met with her new doctor and she is switching medicine to depakote, which I am weary of, but hopeful. I had eliminated processed sugar before on my own as well as lowering bread/ pasta/ gluten and now wonder if that was what was improving the seizures and not the medicine. I have continued to not give processed foods, and stay low natural sugar

        • Certainly I think a low-sugar diet may help overall; at the least it will benefit her overall health.

          But for seizure control, you really need hard ketosis. It’s not a minor change to her diet. Have you talked with your doctor about the keto diet?

          If your daughter is only having isolated tonic clonic seizures, I can see why the doctor may want to stick with meds. For neurologists, I think the keto diet doesn’t really enter the conversation until they run out of good drug options or it becomes clear your child has a specific type of epilepsy for which the diet works well.

          Depakote is a well known drug that has been used for a long time. It may help.

          Is your daughter having any other seizure types?

          Hang in there.

          • Thanks for your support. I called my child’s new doctor about doing a diet instead of a new bed, and she was super supportive and encouraging! We are meeting with a children’s keto dietitian, and will be starting on the Modified Atkins, which is less strict than the original keto, but I feel much more positive about it than I did about the medicine. My husband feels really good about it too

  3. And to answer the question about the type. She only has the tonic clonic, and only has them in the evening. They are typically 3-8 minutes long. She is usually conscious during them, by that I mean, she can’t respond but she can hear us and knows what’s going on

    • That’s interesting. I’m not sure what type of seizure that would be if it lasts so long and yet she is conscious; definitely different than the tonic-clinics I have seen.

      In any case, good luck with the diet. Let us know if we can help!

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