Thoughts on Pediatric Epilepsy Centers
BLUF: I'm curious as to folks' experience with pediatric epilepsy centers and the varying level of care you might find across Level IV centers.
Context: My 5 yo child had three seizures and epileptic activity on an EEG, most likely focal to tonic-clonic and originating from left temporal region, but the EEG was complex and also showed other type of epileptic activity (per our neurologist, if there hadn't been the classic focal/TC seizures and left temporal activity, a "slam dunk" example of how Childhood Absence Epilepsy presents on EEGs). I'm overseas, but I will travel to a U.S.-based level IV epilepsy center to get a more precise diagnosis. Miami (Nicklaus) or DC area (maybe Children's National or Johns Hopkins) are the most likely destinations due to personal connections, but I could try to travel somewhere else.
Questions: Do those with more experience have any advice as to how much the center matters once you're at a level IV? I noticed some places have a 7T MRI -- does that make a difference? Any other considerations? Any places or doctors who specialize in left temporal lobe focal seizures?
Thanks so much -- I've already learned so much just reading posts in this community over the last few weeks.