Jade’s Story

On May 23, 2008, I was awakened early in the morning by a crying toddler.  It wasn’t unusual for our 2-year-old to wake us up early, and as usual I tried to catch a few extra minutes of sleep by bringing her into our bed with us.  Perhaps she had woken from cold, as her hands were almost icy when I carried her to our room.  She lay between me and Michael, occasionally chattering, but also occasionally quiet — something rather unusual for her.

It was in one of those quiet moments that I felt a strange twitching vibration against my arm.  I sat up and squinted, near-sighted, at Jade’s face.  As my glasses settled onto my nose, I could clearly see that her eyes were rolled up and to her left, that her arms were convulsing rythmically, and that her tongue was falling backwards in her mouth.  At the time I’d never had any experience with seizures, but I instantly recognized what was happening.

“Michael,” I said to my sleeping husband.  “I think Jade is having a seizure.”

He was instantly awake, reaching for the phone and dialling 911.  I watched Jade as she continued to seize, feeling horrified yet strangely calm.  I’ve done First Aid courses, I’d heard that children sometimes have seizures, and it’s not necessarily big deal.  But then her lips started to turn blue, and my blood ran cold.

This was just the beginning of Jade’s epilepsy.  As her condition progressed, she experienced not only these tonic-clonic seizures, but also myoclonic jerks, absence seizures, and devastating drop seizures.  She was put through batteries of tests: blood tests, urine tests, spinal taps, MRIs, CT scans, EEGs.  She started on one anti-seizure medication after her second tonic-clonic seizure, but soon a second was added, and then a third.  She “failed” them all.

Seventy percent of epilepsy cases can be controlled by one anti-seizure drug.  Another good chunk can be controlled by adding a second drug.  Jade turned out to be in the small group of people where no drug will control the seizures.

By October, Jade’s little body was getting toxic with drugs.  She was lethargic, sleepy, and emotional.  We pulled the playpen out of the storage closet and set it up in the kitchen so that we could keep her in a safe place.  She wore a soft helmet to protect her from falls.  We pulled her out of daycare because there was no way they could watch her as closely as she needed to be watched.  When she wasn’t a zombie, she still didn’t have the energy to play like other children, and her face often bore bruises, bumps, and scabs, where her helmet couldn’t protect her.  Her learning fell behind.

Even though she had been started on a fourth drug, what we were really waiting for was a space in a special program at the BC Children’s Hospital: the ketogenic diet program.  We were expecting our second child in mid-November

On October 26th, with me 36 weeks pregnant, we flew down to Vancouver as a family so that Jade could start her special diet.  You wouldn’t think that changing the way you eat could control seizures more effectively than expensive drugs with years of research behind them.  But for Jade, it’s true.

The diet was hard to do at the beginning.  Getting Jade used to her new food consisted of many battles that frequently ended in tears on both sides.  Although we saw her brighten up a bit right away, the seizures did not magically disappear overnight.  But slowly, her brain started to heal.

March 1, 2009 was an exciting day in our house.  That day marked Jade’s first seizure-free day since September 2008.  She suddenly had the energy a toddler should have, she was creating new sentences on her own, and she was generally hurtling toward recovery.

Jade did still have seizures after that day, and it was more than a year before all of her seizures were gone for good. We went through near liver failure, medication weans, low selenium levels, hospital stays that were complicated by the zero-carb regimen, and other toughies, but the ketogenic diet was a true miracle for us.

In January 2014, more than 5 years after starting the diet, Jade was able to go back to eating normal foods. In the first two months after going off the diet, she shot up an inch and got to try many foods for the first time. We are grateful to close this chapter, but even more grateful that it was such a success. Jade is now developmentally-normal, loves to read and play active games… and loves food!

We are always happy to connect with families who are just starting their journey with epilepsy or with the ketogenic diet. Feel free to get in touch by e-mail at fawnahareo at gmail.

12 Responses to “Jade’s Story”

  1. Jay September 15, 2009 at 3:52 pm #

    Hello, Fawn

    Thanks for coming to my blog and leaving an encouraging message.
    It’s great that Jade’s seizures are controlled by Ketogenic diet. We got a ‘Go’ from the doctor today for Keto Diet, and we will start soon but without admission to the hospital. It will be a slow increase of the ratio.
    I am hopeful again with this new approach, but even if it is not the answer, I will try to remain hopeful anyway!
    By the way, how did you find my blog?? Just wondering:-)
    Your daughters are adorable!
    All the best for your family! And especially for Jade!

    Jay

  2. Adrianne October 23, 2009 at 11:46 pm #

    Hello. I am so glad that you found my blog. Thank you for your encouraging words. I was so happy to hear that your daughter’s seizures are controlled by the diet. That is such a wonderful thing for me to hear and it makes me feel that much better about having our daughter on the diet. I wish you all the best! Adrianne

  3. beyondpondering November 8, 2009 at 11:20 am #

    Hello, I am a mental heath therapist. I am trying to write a therapuetic book for children. Some topics in it have to do with epilpesy, medication, foster care, adoption, and perseverance. I am trying to get feed back. Would you be willing to read it if I email it to you.
    Susan Walker, LPC, LMFT
    arkansasattachment.com

  4. Loukia December 18, 2009 at 7:54 pm #

    Hi there… just wanted to say that you have an awesome blog here, and also, I hope your daughter continues on this great path she’s currently on with her epilepsy treatment. You have gone through so much with her, and I just wanted you to know that I have a best friend who had epilepsy pretty bad as a child, but sort of outgrew it? as she got older, and now she is fine – I believe she still takes one pill a day, but that’s it.
    I haven’t been through what you’ve been through, but my oldest son who is 4 years old had a bad case of pneumonia last year, and was in CHEO for two weeks, on an oxygen mask, getting countless tests and u/s’s done, and even needed surgery to drain fluid from his lung… and a chest tube for 4 days. As a baby he had a minor kidney condition and was in the hospital for two weeks when he was 12 weeks old with a UTI and again at 6 months, on IV, etc. Nightmare, but somehow, we survive and get stronger. Sorry, I’m rambling… nice to ‘meet’ you!

  5. Kristi Lundgren February 12, 2010 at 7:56 am #

    What a journey! So glad to hear the diet was Jade’s miracle. Thank God!! We’re hoping for the same for our Luke. :)
    Lovely blog you have here. I’m slowing finding other “Keto moms”…mostly in cyberspace. Ha! Dear friendships nonetheless…..
    Thank you for your comment on my my blog. So far, so good on the night time feeds. Thankfully he’s a lot different now, so it’s not nearly as exhausting as I remember when he was an infant. He’s up, guzzles down the heavy whipping cream, sits up, burps, and we’re back to bed in no time!
    YES, he is teething! So, I know that’s a possibility too.
    A lot of tweaking to be done…..but anything is better than seizures, right?

  6. Bruce February 24, 2010 at 12:33 pm #

    Hey You and your husband have great blogs and I hope you focus on the day to day happiness as you face the challenges of the seizures Jade has. I am very impressed with everything yoiu have gone through to get where you are today.
    Best Regards,

    Bruce McKay
    Principal
    Denetia School

  7. K September 29, 2010 at 5:48 am #

    WOW
    what a miracle
    You know my SIL is also in that minority ( the ones whose seizures cannot be controlled )
    But we have not tried the ketogenic diet
    She is 42

  8. Albert December 1, 2010 at 11:49 pm #

    Hi,
    a big “keep up the good job” for you trying alternative ways to battle epilepsy. As an epileptic father of two young daughters, I was taking antiepileptic drugs for 18 years until recently. First against myoclonic jerks (not even sure if it was epilepsy), later against TC seizures.
    One only notices after you don’t take AEDs anymore how much they influence life, how many side effects they have and how little they sometimes actually help. Actually, e.g. taking Keppra changed my life totally, having seizures every two weeks rather than once every two years.
    They might be cure and help for some, but my feeling is, they are prescribed too easily, as that’s the easiest and maybe even the most well proven path for doctors to go along. Sometimes helping quickly, sometimes making things worse, IMHO they always take one further away from one’s real “self” and thus from a true solution.
    All the best wishes for everyone trying alternative methods
    Albert

  9. Norma Risby June 10, 2011 at 9:55 am #

    Dearest Fawn, Michael, Halia and Jade
    Wow, I absolutely love your page. I have had the greatest experience working with your lovely daughter Jade. She is so happy, outgoing and loves to sing on the bus. I hope you will keep me in the loop when she has concerts etc. at school. As you know I have worked with many children but, your sweet Jade stole my heart from day one. Keep up the fabulous work and take care of each other.
    Sincerely
    Norma Risby

  10. Christy April 5, 2012 at 12:01 pm #

    Thanks for sharing your experience. Epilepsy is this amazingly individualized experience but we can all learn from each other. Our daughter, Nora, is 3 and also on the ketogenic diet. Our doctors at Doernbecher Pediatric Neurology in Portland, OR, were quick to let us try it, and thank goodness we found it fairly quickly. Nora only “failed” 2 drugs before the diet did the trick.

    It’s hard, I know it, so keep up the work and know that you are on the right path. We also need help keeping our cool and hope up at times. Visit us on Nora’s blog if you ever need to connect.

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  1. Welcome, PaleoCon Day 7 & Detox Diary - February 3, 2014

    […] had her epileptic daughter on a keto diet. Her daughter is now symptom free. You can read about it here. I was really interested in this one and skimmed through […]

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