epilepsy

[alismum2009]

my daughter has been epileptic since 6 months old she is now 9 years she also has dyslexia and auditory processing disorder. she is on small doses of epilim, ethosuximide, and 100mg lamictal twice daily. she is well under control with the epilepsy but what has been worrying me for a while is upon sleep she starts to twitch shoulders arms legs hand and head sometimes so violantly she wakes herself up. she had a sleep eeg done but this came back clear however she has only been doing this for the past year and a half i have spoke to her epileptic dr about this but i am basically being fobbed off i cant understand that its only come on recently surely this cant be normal

Hi

My DD has epilepsy and twitches about 20 mins after she goes to sleep. We also had a sleep deprived eeg recently and it didn't happen so wasn't picked up. I'm not sure what my DD's are either but suspect myoclonic.

We're due to go back to DD's neuro soon to discuss her eeg (august so not really that soon) but going to query this then.

Is your DD under a paed or a neurologist? Having been fobbed off for sometime i pushed for referral to paed neurologist.

Sorry i can't be more help.

Hi alismum. DS1 has epilepsy and until recently only had seizures in his sleep. He did pretty much as you describe but his too often didn't show up on EEGs. Despite having quite severe epilepsy, his neurologist often dismissed his twitches and just focusses on his tonic clonics and absences. He now has some very weird almost slow motion "superman arms" and eyes opening wide which are very spooky to look at!

Would def ask for an appt with your consultant/neurologist.