myoclonics starting again

[needmorecoffee]

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.

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

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

oh arse. hope the vigabatrin does work for her.

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.

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!

Sorry DD is having them again

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

Oh NMC that's crap.

aaargh sorry to hear that NMC

if you need help hitting neuro shout

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

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

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.

Sorry the seizures are starting up again.

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

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!

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

sorry to hear your news nmc