Friday, November 12, 2010
Home from the hospital with some answers
We were inpatient for 4 days of continuous VEEG testing, and a PET scan. They end result is that Emily is having myoclonic and atonic seizures all day, every day. She has them so often that the neuro said "There's one. There's one. There's one" in between sentences while talking to us. Ugh.
There is no focal point for these seizures, they come from all over her brain. We didn't manage to capture any tonic/clonic seizures, so we don't know if the big ones have a focal point or not, but it doesn't really matter. We wouldn't put her through a resection or any other epilepsy brain surgery to try and control some of them, when she has so many others. The thought is that with so many small seizures, she is bound to have break-through big ones. So ... that's it. I am relieved she doesn't need brain surgery, but not so happy with the thought of her having seizures forever.
The biggest thing we got accomplished during this hospital stay was the actual diagnosis of Lennox-Gastaut Syndrome. It was mentioned to us in her last hospital stay, but wasn't verified. It was thought to be a casual thing thrown at her with no proof. Now it is official. Her EEG shows the classic slow spike-wave pattern of LGS.
We are weaning her off Trileptal, because it can INCREASE myoclonic and atonic seizures in LGS patients. Hello - we thought we were dealing with LGS a while ago, why did we get put on this med? We never had atonic seizures until we started it. So there is a possibility that some of her small seizures may actually decrease, as we wean this med.
If she continues to have seizures or has more when we wean the Trileptal, then we are going to try her on Felbatol. If that doesn't help, there was another med mentioned but I can't remember the name of it. The problem is that it is not FDA approved. You have to get it from a pharmacy in New York that imports it to the US, and pay cash for it. Insurance won't cover it. I don't even remember what it's called, but financially this is not an option for us. So if we need a new med, I pray that the Felbatol helps.
As I am typing this, she had four atonic seizures. She literally just fell over while sitting up and watching TV. It's heart breaking. I hate seizures.
At least we have an answer to this portion of the Emily Puzzle. We are still waiting on lab work that was sent out testing for Tuberous Sclerosis, Cornelia deLange Syndrome, and the SCN1 gene.