Here some suggested organisations that offer expert advice on SN.
Riv - are you about? (Or anyone else on the Epilepsy Express, for that matter...)(3 Posts)
DD1 has obviously Got Something. Off her food, withdrawn, more seizures than usual.
Last night she went status. Well, sort of status. I was sleeping in with her and she is NOT a good bedfellow so I was a bit zonked and out of it. But I think she had 2 mins motor seizure, fading into six mins simple partial, then about 2 mins off, then about 20 mins simple partial, then she may or may not have come out of that one (it's so hard to tell when it's very late at night and the seizure is subtle) then another few mins and tbh I think she was still seizing when she fell asleep again. So heaven knows when that stopped. I think the whole episode was about 45 mins. She stopped breathing twice in it, I think - breathing so irregular and shallow that you can only tell by having one hand on her ribs. I spent most of it dithering about whether to give diazepam.
When the child is very heavily medicated and the seizures are subtle, how do you define "status"? DD1's consultant says something like "5 mins for TC, 10 mins for complex partial, 30 mins for simple partial, 30 mins for any episode where there is not complete recovery between seizures". But how the heck do you define "recovery?" at 2:45am, when both of you are exhausted and half-asleep? Should I be getting a torch and shining it in her face at point-blank range like the evil nurses do when you're inpatient? (I've always thought that is more likely to disrupt sleep patterns and cause seizures than be helpful so I go with dim bedside light.) It doesn't help that DD1 doesn't "do" post-ictal. So she won't come out of the seizure and zonk out, she'll come out of the seizure and straightaway continue whatever she was doing previously. And at night that tends to be <lying there looking as if she may or may not be having an absence>.
Does anyone else have this problem? During the day I just "know", I can tell when she is fully with us and when she is not. But I'm finding nighttime really hard at the moment.
Ah. Yes, DD1's used to be all complex partials a few years ago, and we were much more likely to give diazepam then than we are now.
She tends to self-resolve from the simple partials - but this one was longer than she has had for ages, and a bit touch and go tbh. . She's going through a phase where randomly pretty much any seizure she can stop breathing but so far she seems to be restarting, though she has a history of just not breathing at all in seizures and I could really do without going there again. We can't use the apnoea monitor atm because the bed is so big and she moves around it so much that there's no right place to put the sensors.
I suppose I'll just get used to it again - when things were very dodgy I was always the one that could wake at the slightest sound; I'm still better than DH but I think my subconscious has got a bit complacent.
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