We definitely saw an improvement with his trembling hands. He has better balance (except during an actual seizure). He has talked more today. He doesn't seem to be having a hard time focusing his eyes on objects. :) :)
I think that removing tranxene is helping - either that particular drug isn't good for Ben or the combination of it along with clobazam and clonazapam isn't good.
But he's still seizing a lot.
In a 10 minute period, I counted 9 distinct myoclonic or drop seizures. That was a typical 10 minute period too - he was just sitting at his drum set.
I went back to our seizure journal and tried to summarize our experience over the past 5 months. There seems to be a pattern.
It seems like we have a period where the myoclonic and drop seizures will increase. It started with about 5 or 6 every day, but increased to the point where he would have as many as 30 in a day. We would increase meds, the seizures would increase, increase meds, etc. Until finally something clicks and he has a seizure free day or days.
Then a tonic clonic will reappear. Then those will increase - having 5 or 6 a day. We increase meds until we get those under control and the myoclonic and drop seizures return.
Then we are seizure free again. Then the tonic clonic ones reappeared.
This last time he was having 9 or 10 a day.
Today he didn't have any tonic clonic! :)
But the myoclonic and drop seizures are in the hundreds.
It seems that we are able to get a brief amount of seizure control, but when they return they've always returned in greater number.
What does this mean? I have no idea. One doctor told me not to try to find patterns because there is no rhyme or reason to epilepsy. And maybe we aren't seeing a true pattern. But a few things are sure:
- if we get one seizure type under control, the other one(s) appear
- each time a seizure type comes back, it has increased in frequency
- increasing meds doesn't ever prove to be in direct correlation to seizure control
It feels like maybe we are starting another upswing. Since the tonic clonic seizures have slowed down, maybe in a few days the other ones will calm down again too. And then maybe we can even have some seizure free days again.
This journey is a roller coaster ride. The ups and downs and the uncertainty of every turn is nauseating at times, but there is One constant through it all.
"God is our refuge and strength.
An ever-present help in time of trouble."