Can anyone tell me where my daughter has gone?
For two weeks now, Jade had been waking early in the morning with clusters of seizures we’ve had to break by using emergency medication. Up until last week, that was Valium. But that drug has to be administered rectally (not fun for any of us, least of all Jade) and we’d been noticing that it was becoming less effective. It used to be that once administered, she’d go for a whole day with no seizures at all, since the Valium was still in her system. Now it still seems to stop the clusters, but she continues to have seizures. All day long.
While we were in Vancouver, we asked about an alternative and Dr. Huh gave us a prescription for Midazolam. That’s the same drug they tried to use for Jade’s first spinal tap, the one that didn’t sedate her but made her loopy, instead. The good thing is it can be given orally, so we’ve tried it a few times. Who cares if it makes her loopy if it stops the seizures, right? Since we’ve gotten home, she’s had the Midazolam about five times, including twice today, the first time we’ve ever used emergency medication twice in a day. In fact, she’s supposed to be sleeping right now, but she’s so wired from the Midazolam that she’s upstairs with Michael, who is trying to feed her since she’s hardly eaten all day.
This whole cycle scares the crap out of me. There’s a very real and very scary chance that she could suffer brain damage if we let her seizures go on for too long. That fear tortures me. But the more we use the emergency meds, the less effective they are. We have a two-year-old whose body is already addicted to drugs.
For the past few days, it feels like Jade has been disappearing. She spends a lot of time tired and emotional and asking either for a bottle of warm milk (she has gone through 8 litres this past week!) or asking to sleep. When she tries to sleep, she has seizures that wake her up. Sometimes she seems to be in a fog (Michael describes it as being “drunk”) and other times she just collapses on us and cries and can’t verbalize what she needs or wants, as if she’s forgotten how to talk.
When she’s actually alert, she’s been getting into everything and testing us, like pulling Crook’s tail repeatly after being told not to. Granted, that could be her being a toddler, but to me, it’s just not like the child I know she is. I can’t explain it, but it’s just not her.
Every once in a while, we get a glimpse of her real personality, and it’s like a burst of sunshine in cloudy weather. I think, “Hey, look, there’s Jade!” and I wish I knew how I could keep her from slipping away again.
