Talk to me About benign myoclonic epilepsy

[Poseypops]

My 1yo dd was just diagnosed with this. We are awaiting further tests to exclude additional causes (metabolic/tumor etc). It's rare so google doesn't give much info. I'm curious if any if you have experience of this type of epilepsy. When do they grow out of it? Any additional needs etc. be honest - we really need some real life stories.

Sorry no direct experience (just temporal lobe myself since teens). Presume you've seen/spoken to Epilepsy Action - only seems to be one personal comment on their site anyway. On another site I saw sodium valproate mentioned as a common medication though which wouldn't be appropriate for an older girl but hopefully that's not an issue if your dd might grow out of it regardless of any meds/therapy applied now. Good luck.

Thanks. Info is sparse on EA website but I may call them nxt week. No meds just yet, I wondered if anyone ever grew out of it without needing meds.