Status epilepticus episodes source unknown, biomarkers indicate tonic

Hello! I am writing on behalf of somebody I know. Basically they've been through heck. That's the only way I can really describe it. They've been dealing with... Something... For the past several months. They've had six full on status epilepticus episodes with five needing intubation and two in the last 2 weeks. One vEEG showed polyspike and multi-Spike activity during sleep And they were diagnosed with generalized epilepsy. Fast forward a few months and though that diagnosis was made in the hospital, they were seeing their outpatient neurologist. In an effort to get the seizures under control They were discussing different medication options and it got to the point where the neurologist said that they would not do any more medication adjustments until they went to an emu. I agree that in emu would be a good step in the diagnostic process in this situation but the seizures have gotten so dangerous that they're basically risking my clients life to go to a facility that may or may not pick up something. The problem is if they don't pick up something and ends up being more of a deep brain seizure, that would solidify a non-epileptic seizure diagnosis.

I think PNES is an absolutely valid diagnosis and I know several people who have it. I've had a pnes episode myself. I will openly admit that. I was under a lot of psychological stress and I woke up in an ambulance.

The problem with this is that the biomarkers are indicating seizure activity. From the research I've done PNES episodes generally don't raise your creatine kinase level a substantial amount. It might go up to 200 maybe 300.

The highest reading for this client was over 3,500 and had cola urine. They've also had signs of post ictal activity that can be sometimes picked up on CAT scans that show as some particular type of white matter abnormality.

I knew from the beginning the severity of this case was abnormal. Now they have hemolytic anemia, can't keep their potassium up even though they're tube fed, and are extremely weak. They also have another CFS leak because after they did a spinal tap, they let them seize for two hours. This is the second leak from the same event because they went into status again the next week.

I really want to help this person and if any of y'all have ideas I'm more than happy to do the legwork to make it happen.