Good news: her eeg has improved since she was hospitalized. Leaving the LGS diagnosis in her chart so she is approved for certain meds, but she doesn’t have a concrete diagnosis YET.
Bad news: her eeg still looks messy and she could further progress to a concrete diagnosis.
Good news: there’s a lot of room on two of her meds so we’re not quite to the point we she would need a VNS surgically placed. But that is an option down the road.
Bad news: A VNS isn’t a cure. Lennyn still is at risk for SUDEP with these seizures.
Good news: VNS is like a pacemaker for the brain and if she seized, we would have a magnet we can swipe over it to send an extra electrical current to hopefully stop the seizure. Also, none of the teams VNS patients have ever died from SUDEP.
We’re going to stay on our three med regimen and go for another eeg in 90 days, unless she has an event, then obviously all of that could change. Not the best update but focusing on the little wins.