dd has upped the seizure stakes

[needmorecoffee]

she had 2 last night. An hour apart. Never happnend before
Both after she'd fallen asleep. She's also very twitchy during the day

aww that is horrid for both of you

it did my head in too. I didn't sleep cos I was convinced dd would pass away cos it was 2 seizures. Lay in bed next to her checking her breathing and imgagining her funeral all bloody night.
I am getting paranoid now. I've been too so many funerals of kids with quad CP who were aged 4 - 5 who just didn't wake up

I am so sorry, I dont have any useful wise words of wisdom what-so-ever, and i know it really doesnt help, but i think of you very often and hope you get that little silver lining that you and your DD so richly deserve, {{{HUGS}}} XXX

So sorry to hear this NMC When do you start on the ketogenic diet?

soon. We've done the bloodtest to check she doesn't have that rare disorder where you cant metabolise fats - thats gone off to the lab. She needs a kidney ultrasound and I'm hoping she'll get an EEG.

Each time I reach to check her breathing in the night I am convinced this 'will be it' and she'll have gone. The worry is taking over at the moment and I don't know how to make it stop. Wish the doc hadn't told me he gives her 50/50 of making it till 10. Its much worse than the checking you do when they are babies cos if SIDS and I'm getting in a state
Has anyone flet like this and what did you do?

So sorry to hear this NMC, thanks for taking the time to answer me yesterday, I know you have a lot on at the mo.
Sending best wishes to you and DD xx

How horrible for you NMC {{{hugs}}} I can't imagine how difficult it must be to have to deal with that fear every day. I wish I had some wise words or advice but I don't sorry.

NMC

its why I don't accept night respite cos I am so frighteend she is going to die. Some days (and this is pathetic) I don't want her to go to school in case she dies there - it happenend to a friend. her dd passed away in school.

I am aware this isn't rational and its gone beyond normal worrying but I can't make it stop. Some days are worse than others - seizure days are the worst.
Thanks for listening. Just being able to talk about it helps. DH tells me I'm being silly and the few friends I have have similar fears and don't want to talk about it.

Sorry this is happening NMC ((hug))! I cannot imagine how difficult this is for you all!
Do hospitals loan out any kind of monitor that could allow you to sleep knowing you would be woken immediately if a seizure occured?
Thinking of you and wishing DD well!

I can absolutely understand the panic you feel (SIL had very similar terrifying feelings about SIDS when her children were babies) and i know how overwhelming it was for her - with all your daughter faces (and she sounds like shes a little champ! ) it must be a hundred-fold worse. , i know i speak for EVERYONE of us here when i say that if you want to rant/moan/groan/shout or cry, we are absolutely here for you. XXX

BTW caring for your child and worrying about their future, is not silly - its what real Mums do. {{{HUGS}}} XXX

i think magso has a point, i know that there are the bed monitor things that alarm if theres no movement or breathing. I know that she co-sleeps, but if something like that could be used, at least you could get a smidge more sleep and be able to focus easier. XXX

NMC I do so feel for yo. Elipepsy is such a shit thing. cp is so much easier, I envy people who just have to deal with cp and not the epilepsy(dd's is controlled for now)

did you get control easily or has there been times when it was bad?

DD1 has had an escalation recently too. I read somewhere (a book I nicked borrowed from the nurses' room at Atkinson Morley) that a lot of ideopathic epilepsies manifest at about this age, so it is possible there is some stage of brain maturation that means you are more likely to get seizures now: add that to an underlying problem and I guess the underlying problem gets worse.

That's the theory I'm running with (in which case I expect further problems at puberty - if she has puberty, whole other thread - though of course it may just be that she has an epilepsy that changes from time to time - we don't know yet.

She was controlled on fairly stonking doses of Valproate and Topiramate. We've added Keppra and she's getting more controlled again so fingers crossed that we find a dose that knocks it on the head. Maybe we can even take one of the others out after that - we'll see.

it was odd, she started her epilepsy when she was about 6 and it was pretty full on, lots of clusters and we always seemed to be uppping her meds. then about a year and a half ago. it just stopped. she is still on the same done(215mg lamotrigine) that she was on then, so her meds have now been decreased. but I just touch a lot of wood

sorry to hear this news nmc. night time seizures are so scary

i am so sorry, I can't imagine how hard it must be

we had topirimate suggested but two things put me off - appetite reduction, we have enough problems getting calories into dd, and affect on memory and cognition. Adults I know who have taken it say they felt very dopey and spacey. Its why we picked keppra.
brain maturation is polly right. 4 is the classic age for lennox-gastaut syndrome to manifest

awww so sorry only just seen this i totally understand have they not given you a apena monitor even if its just to help you?, wehave one for chloe

I know exactly how you feel about night time seizures. Ds seems only to have them at night. I think he's had one during the day and that was an absence seizure, it wasn't untill a while after I realised what it was. He's been having them since last september (although had several febrile convulsions before) and always seem to happen when he's coming out of his sleep. He coughs like he is choking and reaches to be sick, sometimes he stops breathing and sometimes he doesn't. He's only just been diagnosed, so for the last year he's been sleeping with me, I couldn't bare the thought of him choking in his sleep. I can totally sympathise. DH has been sleeping on the setee and occasionally I will have a turn just so that I can get a bit of sleep. I sleep a bit better knowing he is with someone. So sorry for how you feel.