The Proposal

I've been dying to get on here and do some bloggin' about this since Friday. But, plans were still up in the air, so I restrained myself. I certainly didn't want to speak too soon.

We have a new plan on meds. And, man, reaching an agreement did not come easy. Not just between us and the epi...but just reaching a decision about what WE wanted to do was a challenge. We were presented with enough to make any parent's head spin. First, let me start with what I had in mind when I placed the initial call....

Personally, I wanted to wipe our medication slate clean and start over. 100+ seizures a day does not signify seizure control...add to that unwanted side effects (drowsiness, lack of coordination, balance loss, etc). Why keep him on so much when it's obviously not controlling seizures? In no way do I want to quit with med game completely. But I wanted a new prospective. There's too many uncertainties where his current meds are involved. Are any of them helping/not helping...are they affecting him cognitively...are any of them making them worse? He's been on zonisamide for just over a year now and valproic acid for seven months. Initially, I thought there were improvements. This is where it gets complicated.

There have been three, possibly four medications that seemed to have a negative effect on his seizures (ACTH, possibly Keppra, vigabatrin, and Banzel). While on ACTH, he had clusters that would last over 30 minutes which would contain in excess of 150 spasms sometimes. Very rarely did he have a cluster that did not contain less than 50-60. And, this started immediately after the first injection. Every time we would increase, we'd start seeing the seizures go up.

We started zonisamide the very same day that we started the ACTH wean. We slowly increased zonisamide as we slowly decreased ACTH. After the second increase, we started seeing improvement. Was it the addition of zonisamide...or the decrease of ACTH? By the time Austin was completely off ACTH, he was having maybe 15-20 a day. Quite an improvement, right? We left him on lower doses of zonisamide for about a month. He did extremely well. But, 15-20 is not zero...which was our goal. So, instead of increasing zonisamide again, our neuro at the time, chose to add Keppra. We gradually started seeing more and more seizures, until he reached an average of 50-60 seizures a day.

So, I'm not going to go through the entire history of our med trials. This is just to serve as an example. To show how foggy this medication picture is. The same happened with vigabatrin. We saw immediate increase in frequency and intensity with this one. But, we stuck it out for about two months. This is when I stopped counting and recording every single seizure. They were coming so frequently that I could not keep up...and it made me absolutely crazy. But, just like ACTH, when we started the wean...the seizures went down as well. BUT...the tricky part is that we added valproic acid at the same time. I knew a lot had to do with getting him off vig, but I also thought the VA was having a positive effect. We started to see a new Austin. A smiley, happy, more cognitively there, Austin. I was sold.

But, just like before, just because the seizures had decreased, didn't mean we were done. Our goal was complete seizure freedom. So, on we pushed. Adding Banzel. A complete nightmare. Back to back clusters. I hadn't seen clusters so fierce since the ACTH days. Our trial lasted a mere three weeks. And, soon after, we introduced Klonopin. Once again, I thought we were seeing good results at first. At first.

So.....can you see where I'm coming from? Could it be more of a relief getting OFF certain meds, rather than getting ON others?

With that, you're caught up for what I was proposed on Friday. You had to know those details to understand why it was such an internal struggle for me to think clearly.

The proposal:

Stop valproic acid.
Wean zonisamide.
Keep Klonopin unchanged (since we have not completed the trial).
Add Felbatol.

Whoa!!!!! Slooooowwww down a bit. You want me to do what?!! My mind could not process so many changes at once. Way too much going on at one time. Way too much. I do not know without a doubt that VA and zonisamide are not helping, although my suspicions are that they are not. But, cutting them both off so close together would create confusion if the seizures were to dramatically increase. It could be due to losing a contributing med or the wean. And, how would we know the difference? Or which one even? What's more, adding Felbatol at the same time (since it's possible some meds worsen his seizures) may only complicate issues even more.

I'm much more comfortable with dropping those two than I am adding Felbatol though. My whole goal in wanting to wean him off some of these was to see if they were worth the side effects. The only way to know that is to take him off. If seizures went through the roof, I'd have my answer. If not, I'd still have my answer. But, there was no possible way I would confuse matters that much more by adding another med to the mix just yet.

I told the nurse exactly that when she called me late Friday afternoon (around 5pm). She agreed to relay my message to the doctor and call me back with new instructions. And, given how late it was, I knew it would be today until I heard back.

So, bright and early, our epi called me back himself (very rare for him). We discussed my concerns and he explained his reasoning for so many simultaneous changes. He's less convinced the valproic acid is working than the zonisamide..therefore, wants to just stop that one cold and wean zonisamide slowly. He pointed out that Felbatol just may stop his seizures and asked would it be worth it to distinguish effects of all the meds...or see Austin seizure free? Point taken. But, not so fast. It's not like I'm not closing the Felbatol door completely. But, how screwed up would we be if seizures went crazy...and we wouldn't know the culprit? Isn't that a valid concern?

Then again, it's quite possible that I may be way over thinking this. Maybe I should just tell myself that neither of the two could possibly be considered to be successful with 100 daily seizures occurring. Even if they are helping...it's obvious they're not the ONES. What does it matter? I think that's what our epi was trying to convey to me. And Felbatol could be our next hope.

That's another blog. I'll just leave the Felbatol concerns at this...I'm not going there just yet.

So, the new plan:

Stop valproic acid (although I'm going to wean it, I think).
Wean zonisamide much slower (we're doubling the weaning period -six weeks to be exact).
Keep Klonopin.
Wait on Felbatol (although I will most likely pick up the script to have it on hand -as it's not one our pharmacy keeps in stock evidently).

There it is. Quite a long story for such subtle changes to the original plan, huh? There's a little more to this (namely his opinion of Austin's condition and the Felbatol), but I couldn't possibly cram any more into this blog today. I'll get to it.