September 29, 2009

Looking forward to the day when my child becomes a cyborg.

I was in Vancouver for two weeks, mostly for work-related activities. Near the end of my stay, Fawn flew down with Jade and Halia. Upon seeing them again, I marveled at how much kids can change in such a short amount of time. My jaw was constantly dropping because of the things that Jade was saying and the things she could do. After all the drug- and seizure-induced delays, we're really seeing progress now.

Halia, too, is as good as walking. She still chooses to scootch on her butt over long distances, but she's perfectly capable of doing it as a biped.

Fawn and the girls came down because it was, once again, time for Jade to get an EEG. We wanted to know: Will the EEG show any progress? Are the ongoing challenges and tribulations of the ketogenic diet worth it? Has removing her allergens improved the situation?

We sleep-deprived her and did the test.

Afterwards, we met with the epileptologist who told us the results. When she was sleeping, Jade's EEG showed that she's still having seizures and that the seizures are disrupting her sleep, effectively waking her up. Being woken up shortly after you fall asleep is not a good thing. We have more work to do.

On the bright side, Jade's EEG also showed that she had NO seizures during the waking portion of the test. None. Zero. Zippo.

Overall, it's a major improvement.


Now, we're weaning her off of the last of her medications, will likely do another ratio increase, find a substitute for her supplements (which contain an allergen), and will remove any newly discovered allergens once we get the expanded allergy test results.

In three months, we'll go back to BC Kids, but this time Jade won't have a short, sleep-deprivation EEG. Instead, we'll hook her up for eighteen hours wand let her sleep, eat (keto food), play, and live life like any normal kid with a dozen wires attached to her head.

She'll look like some kind of crazy discount-store cyborg and I, for one, am looking forward to it.

Vive la progr├Ęs!


Megan said...


Scientific Chick said...

I've been looking forward to this update so much! I must have checked your blog and Fawn's twice a day at least.

Wow, good news! I'm absolutely intrigued about the fact that seizures at night and during the day might have different triggers. It's really great that the day seizures have stopped, though! Good job to you and Fawn on keeping up with the diet.

Allmycke said...

Congratulations to you all!

Jennybell said...

In Aug. our neuro came in to give me the EEG results looking like she had bad news. The news was that it wasn't normal but showed improvement and I was like "I'll take that!" I expected more of the same so any improvement is a plus! Naomi still has seizure spikes but they're spread out, and show no pattern. The background is slow so that's why we're seeing develpmental delays, but I just keep hoping maybe the slowing, is healing. Who knows! If the Dr's can guess I can too :)
Glad to hear Jade's daytime seizures are gone! That's got to be a huge relief not to feel like you have to follow her all day worrying about a fall! (that's about where we are right now! UCK!!!)