I can't remember when I started noticing them (at least since April), but it was one of those things that happen again and again until it intrudes on your conscious mind that something's not right. It's more than just staring off into space. It's the same movement of her head, the way it kind of rigidly drags down to her chest, sometimes including her shoulders and upper arms. It's the particularly vacant focusing of the eyes straight ahead. It's the absence for approximately 1-3 seconds, no response when her name is called. It's the snapping back, usually unsure about what came before, but not aware that there's anything missing: no distress, no apparent suffering.
I was first able to describe this more than three weeks ago to our First Steps PT, who told me she thought they were seizures. I was alarmed to say the least. She suggested I monitor and document for a week and then call the pediatric specialist we'd seen in March – after two days, I'd seen enough and called. In the meantime, Drew and I'd been reading up on the internet and between us, our best guess was that Z had absence seizures, or petit mal. Dr Hoffman's nurse was skeptical at first, but as I described episode after episode, esp one in particular in which Z stopped mid-laugh, the nurse suddenly became concerned and contacted the doc who was out-of-town. Within half an hour, she'd called back to say that Dr H had ordered an EEG – labeled "urgent" only because of her age – and within a week of that, we had an appt to see the neurologist (yesterday) and scheduled a first-available EEG in mid-July. Then it was off to the pediatrician's to inform her what was going on, and the best parting advice she gave me, "Get it on video". Thinking back, I'm thankful to have had all these great resources built up waiting for this moment: I hope the "bottom" of Z's development issues.
