Hopes seizures aged 6 years. Intractable epilepsy #epilepsy

Added: 2026-05-12

[00:00:00]Love you [singing] till the morning back.

[00:00:04]I love you till the love zone tap.

[00:00:08]I love you more than stars in the sky.

[00:00:11]But the stars in [singing] the sky never ask why.

[00:00:16]When my love is forever your love.

[00:00:21]While your love is forever mine.

[00:00:25]While I'm standing in the heat of the hard part and I'll still call you by [music and singing] the divine.

[00:00:35]I I love you love you in [music] a loud loud room like you coming in with the light up. Too hard to feel in the hands got still in the head got clumsy >> [music] >> but it never will. Know the love in the calm in my chest when the world got bumpy. Yeah.

[00:00:50]You don't know the rest.

[00:00:51]>> [music] >> I love you past the pretty part, past the perfect, past the bones, [music] past the refined, past the nose. I love you right.

[00:01:01]Well, so she's the no morning. It's now half nine.

[00:01:04]She just woke up seizing again.

[00:01:07]No school today, baby.

[00:01:11]Mhm.

[00:01:19]Okay.

[00:01:33]Okay, baby.

[00:01:42]Good girl. Little ones now.

[00:01:46]For every few seconds she does that. She has a little spasm.

[00:01:51]These are light ones as we call them now.

[00:01:54]I don't think you can about to sit up yet. We're not finished, are we?

[00:01:58]Hopey, see?

[00:02:03]You can't get up.

[00:02:05]That's our one choice. Turn to the right.

[00:02:11]And she's a bugger cuz she tries to sit up while she seizures.

[00:02:15]If she's eating, she'll try and carry on eating. If she's drinking, she'll try and carry on drinking, won't you?

[00:02:23]Okay.

[00:02:25]That little beauty, yeah.

[00:02:32]Just little ones now, little lip biters.

[00:02:35]She does that as well. She'll bite your lip.

[00:02:40]>> [snorts] >> That's one.

[00:02:43]Hi.

[00:02:46]We have clusters and clusters of these all day, don't we?

[00:02:56]Good girl.

[00:03:00]Nearly done now.

[00:03:17]So, finished?

[00:03:21]Want to try a drink?

[00:03:23]No?

[00:03:24]I haven't finished yet.

[00:03:29]I'm going to get you to say when you're done, okay?

[00:03:33]Yeah. Good girl.

[00:03:41]These are light ones, but they go on for ages, don't they?

[00:03:47]Which is where the confusion is cuz on Hope's care plan, she can I a cluster coming in now seizures like this for up to 20 minutes before emergency meds are given.

[00:03:57]And my question always is, well, the start of strong seizures, obviously convulsions, sometimes loss of breath, stuff like that, but then last 5 10 minutes, are these light ones?

[00:04:09]So even now, as you can see, she's trying to trying to sit up. She can't sit up totally by herself anyway, but during a seizure as well.

[00:04:17]So if this was still to go on for another 16 minutes, would any of you guys give emergency meds? Cuz I wouldn't, cuz they're really light and they're coming to the end, if you know what I mean. You know when they're slowing down, you know when they're fast in it, you know when they're not going to slow down.

[00:04:33]The neurologist always said to me, "Well, go on what you think."

[00:04:37]Which is great, cuz we all have that responsibility, don't we? That it's our fault if we don't do it early enough, or if we did it too late, or where we've gave it them and knocked them out for 48 hours nearly, and they didn't need it at all. They were coming out of it.

[00:04:51]So it's it's one of the one the teachers have just struggled as well. They They're always saying like they're there ready waiting, but they themselves know she's coming out of it.

[00:04:59]So if it goes over the time, do you still give emergency meds, or do you give her the extra couple of minutes, knowing that she's going to stop, that she's coming out of it?

[00:05:08]It's very tricky, ain't it, LP? Would you like some juice now?

[00:05:12]We need to get some breakfast before you crash again.

[00:05:16]Cuz after that seizure, you're going to go sleep again, aren't you?

[00:05:22]Yeah.

[00:05:24]Fortunately, yeah. That's the life, ain't it?

[00:05:27]Eat, sleep, seizure, repeat.

[00:05:32]Me?

[00:05:33]Beautiful girl. Just gave some num-nums.

[00:05:37]Say bye-bye.