Wiped out

Wiped out. Yes, that's pretty much how I feel right now. But mostly Amy: by 5pm today she was curled up on her dad, losing the battle to keep her eyes open, not interested in food or CBeebies or anything really. And that was after a three-hour nap. Yesterday was the same. Her relief when we gave up trying to prolong the day and tucked her up in bed was huge. So the weekend, for Amy, was kind of wiped out too: she just wasn't up for doing anything much. We pottered about while she flopped and slept - I even read almost an entire newspaper, including the review section, in one go - but it felt all wrong.

Wiped out by seizures. When the first unmistakeable one happened three weeks ago, I hoped it might be a one-off. But that's not quite how it's turned out. They don't happen every day. But increasingly often. (Including, handily, while she was having an EEG earlier in the week.) Four yesterday, five today. Mostly she's had an episode, it's passed, and all has then gone back to normal. This weekend, they've made her sleep. It doesn't leave much time for physio, or communication, or just going out and about.

They are quite extraordinarily draining. Watching her, waiting for her to 'come back', wondering what's going on and what we should be doing about it. I've been reading up on seizures, talking to other Rett parents, and trying to make sense of what we see from the outside. Hoping it'll tie up in some logical way with the EEG results, which we're still waiting for. I understand it all so imperfectly. But I know there are different types of seizures, and that there's no one specific type associated with Rett syndrome. I reckon that Amy shows signs of at least two: absences (the brief starey-blinky ones that come and go quickly), and complex partial seizures (the ones where she's completely out of it, rolls her eyes, sometimes jerks her legs, vomits at the end and then sleeps). We've also seen her do something that fits the description of atonic seizures, where her head drops forward.

Maybe it's none of those things, and the odd episodes we're seeing are caused by the autonomic dysfunction and motor dysfunction that make Rett syndrome the complicated disorder it is. I don't know what it is: but it is something, and it's different, and it's yet another thing to get in Amy's way and make her life hard.