We've had John down to 200mg (1 pill) of Banzel in the mornings and evenings without any change, so we (along with our doctor of course) have decided to take him off of it completely. It's likely not doing anything at that low dose anyway. We've halved the amount for now, and will half it again next week, then get rid of it completely. Next up is Klonopin. This is an old-school drug. It's a benzodiazapene, which we haven't tried in years and which I would have refused a few years ago. But, our neurologist talked us in to giving it a try. I'm mostly worried that even if it works, John's body will become accustomed to it, and we'll have to raise the dose to keep it effective. You can do that for awhile, but at some point it gets to toxic levels. Then, withdrawal is very difficult.
Like all of these drugs, the side effects are pretty bad. Here are the common side-effects:
ADVERSE REACTIONS: The most frequently occurring side effects of Klonopin are referable to CNS depression. Experience to date has shown that drowsiness has occurred in approximately 50% of patients and ataxia in approximately 30%. In some cases, these may diminish with time; behavior problems have been noted in approximately 25% of patients.
John has continued to have his normal amount of small seizures. His seizures often present themselves as vomiting episodes now, which is pretty frustrating. We've had to send a lot of spare clothes to school.
He knows a LOT of songs now, and tries to talk quite a bit.
We're also looking in to getting John in to the special needs dentist at OHSU. They will sedate him if necessary. If they have to sedate him anyway, we'll probably try to get an MRI done again while he is sedated. It's been a few years since he's had one.
I'm also looking in to genetic testing. It costs several thousand dollars, and insurance may or may not help. The doctor said he'd refer John, but it's up to us to contact the testing company and insurance to see what they can do.
I'm off to an "Emerging therapies in Epilepsy" lecture tonight at OHSU. Should be good.
