I know this doesn't answer your question but I would recommend ruling out mitochondrial dysfunction and low cerebral folate/folate receptor antibodies (FRAT). You will need a MAPS certified doctor to test for this. Don't expect your standard allopath at CNMC or JHU to know anything about this. Also, test for toxins and hidden toxic mold in the home.

Saw neurologist and more testing. Just trying to formulate a plan for when we can’t be with her

In your shoes I pushed to see the neurologist ASAP and they got us in within a week.

Our daughter has seen a spike in her seizures this summer(5) compared to two in the previous two years. We acquired a EpiMonitor watch but what do you do when you can’t be with the child 24/7 until meds can be balanced or the cause determined? TIA