Since Jade started having seizures at the end of May, I searched for (and found) blogs of families who also have children with epilepsy. A number of them have seen improvements in the children’s seizures, either through finding the right medication or through the ketogenic diet. I love reading about the kids who get better — their stories of hope are so inspiring and heart-warming. But I have to admit that I’ve felt envious, too. No child deserves to suffer from seizures but reading these stories of recovery would make my heart cry, “When is it Jade’s turn to get better?”
Now, to be fair, Jade is much better than she was in September and October. If we’d counted every twitch of her body as a separate seizure, as some do, she was easily having hundreds of seizures a day. She was doped up on drugs, zombified, drooling. One family described it as “looking at a blank child”, like the child isn’t even there — that’s what Jade was like.
From the day Jade started the ketogenic diet, she started doing better. We’ve had ups and downs with her seizure count and energy, but overall we knew the diet was making a difference, that is was working its magic for her.
These past few days, I’ve been on the brink of tears so many times. And although once I really did burst into tears after fighting with Jade to finish her lunch (she’s discovered the trick of not swallowing — grumble) most of the time, the tears haven’t been from anger or frustration, but tears of relief and gratitude.
We started Jade on her new diet plan (same calories, but more of them from fat) on the night of the 20th. It’s been barely a week and a half and we’ve seen dramatic improvements. The last four days we have watched Jade bloom so much, it’s absolutely breathtaking. She’s been pretending to read to herself, using new words and new word combinations all on her own, playing with other kids, and practically overflowing with energy. She sang the first two lines of Twinkle, Twinkle Little Star the other day while we were going downtown, and I had to remind myself that letting the tears come out would not be conducive to driving.
And the seizures are way down! Mornings have long been the worst time of day for seizures. We try to whisk her out of bed and cram breakfast down her throat as quickly as possible because after fasting for about thirteen hours her body needs fat for energy ASAP. Yesterday she had one very light body jerk and a bunch of twitches during breakfast, but she had absolutely none the rest of the day. And today she had none during breakfast. I’m keeping my fingers crossed that today might be the first seizure-free day for Jade since September.
It looks like it’s finally Jade’s turn to get better.