The postictal phase of a seizure is the period of recovery after the electrical event has ended. I've never had a seizure, but I feel like I'm in the postictal phase of one now.
Cesare's case went before the surgical board at NYU. They considered his candidacy for the RNS implant. They said no. The build up, let's call it an aura, lasted about five months and included a smorgasbord of tests: VEEG, MEG, neurophychological, MRI. The event itself was simply a brief email. For a moment, I lost my breath and couldn't hear anything around me.
The after effects of a seizure can include "both psychiatric and cognitive symptoms". I have both. I feel angry and I think I could wail on someone. This isn't a rational anger. The surgical team did not "set up" my son, nor did they come by this decision casually. But postictal behavior isn't rational. Or is it?
I just want treatment: every last established or experimental treatment that exists. Anywhere. That's all any of us want. The inequity of the CBD oil phenomenon, for example, is cruel. Those of us outside the small windows of places like Colorado Springs are like empty pocketed children who may only put our noses to the glass and wish we were allowed in to the sweet shoppe. Today I read three articles about parents whose unimaginable loss could conceivably have been prevented with access to CBD oil for their children with epilepsy.
I understand controlled studies. I understand risk analysis. But I'm a parent and you probably are too. That supercedes patience and tolerence for regulated health care. Shirley...
Perhaps a different but no less exacting role is the epilepsy doc or surgeon who has to say "no". Hundreds of patients and managed medicine that demands docs squeeze caring into just minutes for each appointment. An inbox that's never empty. Failed treatments. Patients who succomb. Two of Cesare's docs over the years left their jobs because it was just too much: one I still miss, the other had no heart. But those that see it through are quite simply remarkable. The doc who perfomed numerous surgeries on Cesare, and is responsible for eliminating Ces' most severe seizures, still rides his white horse into the operating room at NYU after 25 years in practice..even though he declined to mount-up this time.
I'm sure with time I'll shake off the impulse to smash something or to picket the hospital and I'll allow rational thought to reign.
What comes after the postictal phase? Life.
