Until she was 1 1/2, Reese was pretty normal. She was a wonderful, curious, always happy, and easy going little girl. She hit nearly all of her motor milestones early and knew about 40 ASL signs, so she was communicating pretty well, although she wasn’t talking quite as much as we would have liked.
In February, Reese started to have these weird twitches where her arms would fling out to the sides about shoulder height and her head would jerk down a little. Very brief. At the beginning, it would happen every few days, but became more and more frequent. There wasn’t any discernible pattern – just 6-9 and spaced out throughout the day, sometimes in clusters of 3-4.
In late August, she had a longer one of these twitches, immediately rolled over, and slept for 2 hours. This seemed weird to us, so we were told to go to the ER downtown. We had an MRI that came back normal and a 24 hour EEG with video monitoring. We were sent home and told to keep our appointment for later in the week with the neurologist that we’d been waiting months to see.
When we met with the neurologist, she told us that Reese had epilepsy – her twitches were myoclonic seizures. Reese was put on Keppra. I’m a little on the crunchy side and so I hated having to put her on medicine. Always the optimist, I hoped that maybe we could be on the lowest dose, stay on it for a few years, wean off it, never have another seizure, and get out of this whole thing unscathed. Over the next several months, the medicine would seem to help for a couple days and then stop being as effective. We’d up the dose, it’d help a little, then stop being effective. At best, we were down to about 4 seizures a day and they were a little less intense in that her arms wouldn’t fling up as high. The clusters mostly went away. In November, when we’d maxed out the Keppra, we added in Topamax. That didn’t seem to work much better.
Meanwhile, we tried to keep Reese’s life normal. Her motor skills were age appropriate but we felt her speech delay was becoming more apparent. She was improving, just slowly.
In late November, she had a routine 30 minute EEG. A couple days later, the neurologist called us and wanted us to come in. We were told that Reese’s EEG was very unusual. It looked similar to hypsarrhythmia – a type of brain activity strongly linked to developmental regression. She had epileptic encephalopathy. Reese didn’t fit any diagnosis exactly, but it was like we were between Infantile Spasms (catching it late) or Lennox-Gastaut (catching it early). We were told that there was a substantial chance that Reese wouldn’t develop past where she was now, and could start to regress. It felt like we were supposed to go home and just wait for the inevitable.
After that appointment, Matt and I didn’t feel like doing much of anything. We wanted to just stay home and feel sorry for ourselves. That same day, we changed our minds. We wanted to make memories and enjoy every moment we got. No matter what the future held for us, we didn’t want to change anything or feel sorry for ourselves. We’d just be happy with what we got, whatever that was.
As my mom likes to say, we would just keep redefining normal until we got there.
I had often considered the ketogenic diet, and would mention it at every doctor’s appointment, but was told that it was too hard and “we weren’t there yet.”
Because of the recent EEG, the neurologist wanted to put Reese on prednisone, hoping to at least preserve the brain function she currently had. After a few days of prednisone, she had her first seizure free day since February. It felt amazing! A normal life flashed in front of my eyes. Unfortunately, a day or two later, the seizures came back. This wasn’t working and she had us admitted into the hospital.
We got started on a continuous EEG with video monitoring. We then met the doctor who would become our new neurologist, Dr. C. He quickly decided that clearly the current medicines weren’t working. He decided to start her on ACTH and several other medicines. With constant tweaking of new medicines (I’m convinced he doesn’t sleep), Reese had no more myoclonics, but instead had tonic seizures as she was drifting off to sleep and sometimes a few during the wake transition. I started to loathe the sleep transition. But during the day, she didn’t have any seizures.
After a day or so with our new neurologist, he mentioned the Ketogenic Diet and I jumped on that – I asked when we could start. He said it was hard, but if I was up for it, we could. Just like that, we started and immediately cleared the room of any carbs (we’d been bribing her with Rice Krispy treat to get us through hospital procedures).
The first few days were rough. Especially the first half day. We had to say no to basically everything she wanted. It was heartbreaking. She was so hungry because of the steroids. Sugar free Jello got us through.
I’m the first week, her seizures went from 100, to 40, 20, 12, 0. I figured it wouldn’t last, just like with the honeymoon effect that the medicines had, but before we knew it, we celebrated 1 week seizure free! After 10 days of being seizure free, while going to bed, Reese had 3 breakthrough seizures. She had a couple more shorter ones during nap time 2 days later. Tough to say why she had a hand full of breakthrough seizures, but we switched to the classic 4:1 Ketogenic Diet (in hindsight, we had been doing more of a Modified Atkins diet).
She had started to come alive. She was dancing to the music on the TV. She had a twinkle in her eye again. She was giggling. It was magical.
I was told this diet was hard. It certainly isn’t effortless, but a little planning and measuring meals isn’t hard. Watching your child have countless seizures everyday is hard.
Reese is strong, stubborn, resilient, and brave. And today, she’s has been seizure free for 50 days and is weaning off medications. After less than 2 months on the ketogenic diet, Reese’s EEG has normalized. I still absolutely can’t believe it. I feel like I’m witnessing a miracle.
I’ve created a blog to share our journey in hopes of encouraging others considering the ketogenic diet for epilepsy – www.MyKetoKid.com