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.