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myoclonics starting again

(19 Posts)
needmorecoffee Tue 28-Oct-08 17:50:13

had a fair few seizure free weeks and now saw 2 'jerks' today. Neuro doesn't know if they are myoclonics and therefore the vigabatrin she is on wont work or short tonics and therefore it will.
Am banging head against keyboard.

misscutandstick Tue 28-Oct-08 17:52:16

aww riv thats really crappy news, im so sorry to hear that. {{{HUGS}}}

needmorecoffee Tue 28-Oct-08 17:54:08

I'll give her a good slapping!
We're seeing the ketogenic dietician next week so will get cracking on with that but epilepsy comes in 'waves' so you never know if its stopped or started cos of something you did.
I can deal with dd's CP but the epilepsy brings me to despiar sad

TotalChaos Tue 28-Oct-08 17:55:23

oh arse. hope the vigabatrin does work for her.

needmorecoffee Tue 28-Oct-08 18:01:42

she's been on vigabatrin over 4 years now so eithers its stopping most of them or it isn't doing anything. Impossible to tell.
argh with knobs on.

misscutandstick Tue 28-Oct-08 18:37:07

that must be soooooo frustrating!!! how can a person work with that??? A problem that 'comes and goes' (obviously it doesnt, it must just kinda 'lurk' or something) an illness that changes the rules! thats just blardy unfair! angry

Mitchell81 Tue 28-Oct-08 19:15:17

Sorry DD is having them again

feelingbitbetter Tue 28-Oct-08 20:16:05

I am sorry to hear this.
Do you think it could be linked to her being unwell? I know I can't compare at all but DS is seriously jerky when under the weather.
Hope that's all(?) it is and it'll pass soon xx

BriocheDoree Tue 28-Oct-08 20:47:57

Oh NMC that's crap.

Tclanger Tue 28-Oct-08 21:38:06

Message withdrawn at poster's request.

madmouse Tue 28-Oct-08 21:51:42

aaargh sorry to hear that NMC sad

if you need help hitting neuro shout angry

needmorecoffee Wed 29-Oct-08 08:19:32

we saw neuro last week and he's so vague I am beginning to think he was stoned!

misscutandstick Wed 29-Oct-08 12:23:56

maybe you should ask to see his doctorate... if he claims he's 'lost it'.... hmm

needmorecoffee Wed 29-Oct-08 13:52:47

heh. Its probably cos her epielpsy is one of the nasty syndromes and they can never tell what will work and what wont and what affect it will have on intellect.

bullet123 Wed 29-Oct-08 14:49:08

Sorry the seizures are starting up again.

monstermansmum Wed 29-Oct-08 15:37:06

Sorry about the seizures. Maybe you could try another med?? My DS takes NOOTROPIL (Piracetam) for his myoclonic seizures.(+epilim). His seizure activity is also worse when unwell or under the weather. x

needmorecoffee Wed 29-Oct-08 17:26:08

she is on keppra which is from the same class as piracetum but its annoying that even when you have 'control' you still get breakthroughs and you wonder is it cos she has a cold or her weight has gone up or down or are we losing seizure control or is it just a blip.
So you have to wait and see. These myoclonics have vanished before without us doing anything except getting stress-y!

trace2 Wed 29-Oct-08 17:30:38

awww just seen this nmc so sorry i dont know what to saysad

mummypig Wed 29-Oct-08 23:28:53

sorry to hear your news nmc

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