u/moemoemoe1111

Looking for insights - five year old child has early onset epilepsy (multifocal), tonic clonics, refractory, maxed out on clobzazam, brivaracetam, and carbamazepine. Has had ataxia and fine motor issues preceding onset of seizures. Normal MRI, GDD, etc etc.

Child crashes out for weeks AFTER an illness - mania, grabbing head and screaming (seizure? Headache?), extreme (but variable) fatigue, weakness, break through seizures. At a loss, they can’t go to school like this.

Has anyone experienced something similar? I had a reco about GLUT1, we didn’t see any variants of concern on our sequencing.com results but still possible.

No bot or AI responses.

ETA we are currently waiting on trio exome results through our health system but feeling like I can’t wait another month.

Wondering how many meds it took to get young child seizures in control? Tonic clonics started two years ago but suspected smaller seizures happening long before three years old. We are on our fourth med - are currently on brivaracetam, clobazam, and carbamazepine, have rescue meds. Keep getting breakthrough myclonics during day.

Hard to tell if epilepsy is progressing or we just haven’t found right meds. Thanks for insights.

Edited to say: if you are AI do not reply

In Canada - what is the expected protocol for status epilepticus after rescue meds? We were told to call 911 for seizures over five minutes for our five year old, but now that we have rescue meds, would you still call 911 after giving rescue meds as back up and for post-seizure check? Thank you! Will also ask my neuro when I can.