Hi there! I apologize for the novel but I am a mom who could really use any advice or insight that anyone has out there. I have a 9 year old daughter who had braces put on and the next day had her first focal aware seizure with oral motor movements and left sided Todd’s paralysis (feb 2025). These seizures continued daily until the braces were removed 5 days later. The seizures stopped the day after removal. She was then admitted to Cleveland clinics EMU where she was diagnosed with epilepsy- suspected focal cortical dysplasia. Her current epileptologist was okay with the wait and see approach before meds as we were hesitant.
For 14 months she occasionally would get aura and then a tiny bit of Todd’s paralysis in her left upper lip but no movements etc. That is until 2 weeks ago when she lost a tooth which was the first one in years. The next day she had a much bigger seizure and then 7 days later she had a focal to bi lateral tonic clonic.
We are obviously now at the point of medication but my husband and I are a little confused and her doctor wasn’t able to really answer our question so hoping some of you might have some knowledge on this …
I hear a lot of stories of people going on meds with originally infrequent seizures but are advised to take medication and then when they try and go off the seizures are so much worse. What I would assume is some sort of rebound? Like the medication basically creates an artificial baseline and when you try and come off the baseline is worse than the original pre- medicated baseline ?
We are curious why things like SUPEP and status elepticus, while they are a concern in someone who has never been medicated, seem to be an even bigger concern for people who come off their medication or don't take it appropriately? It seems like the medication runs a risk of making things worse if seizures are not controlled effectively and people's lives depend on the medication (having it available, not missing a dose, etc) because coming off of it could lead to such severe consequences.
Really trying to fully understand how these medications work.