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September 19, 2013

Jade: 5 Years on the Ketogenic Diet


In May of 2008, when she was about 2-and-a-half years old, my eldest daughter, Jade, started having seizures.  About a month later, she was diagnosed with Myoclonic Astatic Epilepsy.  Medications didn't stop the seizures and by October she was having hundreds - if not thousands - of seizures every day.  We had to use emergency anti-convulsant medications almost daily.  Our previously-bright and cheerful daughter had become a shell.  We were losing her.

At the end of October, Jade was inducted on the ketogenic diet at BC Children's Hospital.  We noticed an improvement immediately, but her seizures persisted.  The following March, we had to make an emergency trip to Vancouver because she relapsed.  We weaned her off the anti-convulsant medications shortly after that and aggressively increased her fat to protein and carbohydrate ratio until her body couldn't take it any more (twice going to a 5:1 ratio, but on a 4.75:1 ratio most of the time).  

It worked. 

About a year ago, one of the doctors said Jade "had" epilepsy, which is not to be confused with "has" epilepsy.  We were stunned and thrilled and the slow process of reducing the ratio and weaning Jade off the ketogenic diet began.  Of course, reducing the dosage of her "medication" has risks, because it could mean the return of her seizures.

Last August, Jade and I were back at BC Kids for her latest EEG.  It came back squeaky clean.

Jade is now on a 2:1 ratio, which will be reduced again today.  The doctor expects she'll be out of ketosis and off the diet by February.  We're watching her closely, but in my very core I know she'll be OK.

Jade accepts the diet in stride - and even seems to be proud of it - but I'd be lying if I said the diet is easy.  I think it's often made out to be harder than it really is - and it is, truly, a pain in the butt at times - but it saved our daughter.  Jade, who was once reduced to a drooling, twitching shell, with vacant eyes and an uncertain and frightening future, is now a bright, happy, and personable 7-year-old who loves school, drawing, singing, and reading.  She's always got her nose in a book these days.  Her eyes gleam with mischief, adventure, and love.  

And we couldn't be happier.

4 comments:

Matt, Kara, Hunter and Cavan said...

I find it so amazing that it was food, not medication that did the trick. Your daughter is one tough kid!

Hurray for mischief, adventure, and love!

Fawn said...

Well, it's not like this is a new story for me, but it still made me cry. And thanks for being there for us, Kara. <3

Anonymous said...

Its nice to know that you can try an alternative treatment that works!

You have to give yourself and your wife credit for going for it and being fastidious with measuring food and staying with it.

Well done!

Joshua Stewardson said...

Congratulations - how exciting to be on 2:1 (and lower!!) Our son had myoclonic seizures kick in just after he turned 2 and followed a similar progression up to hundreds per day. Thankfully we heard about The Charlie Foundation and were able to do the ketogenic diet as a first-line of treatment and it worked - definitely a miracle we are so thankful for! Kudos to you guys being so committed to it for five years - it is a major encouragement!