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.
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
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!
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
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!