Skip to main content

What I'm learning about Banzel (Rufinamide)

I've learned that should you call Eisai Co., Ltd. to attempt to discover how much one (without insurance) would pay for a bottle of 200 mg tabs of their drug...


you'll hang up quite disappointed. Seems they are not legally able to share that information.


Nor do they have listings of the prices per bottle by main-stream pharmacies. Like CVS. Or RiteAid.


That just really gets under my skin.


******

I already knew that the side effects are sleepiness...stuffy nose...hearing issues...upset tummy...headaches...


but I also learned that three children trialing Banzel had status seizures!


Although no one is ready to label that as a side effect. And it is unknown if the children were prone to status or not. One of the children was put back on the drug...and has proceeded without further issues.


And even though Trevor has never had a status seizure...I still requested Dr. Neuro write a script for diastat to have on hand.


******


I learned that it's super easy to crush. And dissolves without stress. Unlike B-6 which has Jonathan always just this side of cussing when he's trying to draw our maple syrup concoction into a syringe.


******


Trevor's max dose will be 350mgs AM & PM. We'll titer up to full dose by the beginning of May. As long as he handles it well. We've already scaled back on how quickly we'll move upwards...because he's already showing signs of excessive wobbliness.


We'll also keep Vigabatrin at 250mgs in the PM.


If we achieve any level of seizure relief we're not touching a thing! Trev needs all the reprieve he can get!


******


And lastly...I learned that we'll be giving it two months. And then we'll pull the plug.

Comments

Mama Skates said…
here's 2 hoping this one is trevy's miracle drug!!!

xoxoxo,
sharon
Thanks for the info! that gets under my skin too...why the secrecy??? ugggghhhhh!!! good idea to ask for the diastat, i'll have to keep that in my mind for our next visit. Praying that this is what works for Trevy!!
Adesta said…
D, I never did understand the secrecey of these companies....I don't see how the price of something is such hush hush information....

Hoping that this works for Trevy!
Shanna Grimes said…
Fingers, toes and eyes crossed that this one will be the answer and without and nasty side effects. Ugh, I hate trying out a new drug, don't you??!!
blogzilly said…
Me too, hope that it works out. My god it is so frustrating to all be in this boat as far as watching our kids go through this and trying this and trying that, and you have been doing it longer than I have...you have a TON of strength, much more than I do at the moment.
Katie said…
I hope Banzel turns out to be a good fit for Trevor, like it has for Lily! We aren't seizure free but we've seen a marked uptick in development, alertness, and interactiveness (is that a word??). Anyhow, it's been a good fit for us.

Popular posts from this blog

No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...

runaway

I tend to be a live out loud kinda girl. But sometimes... well...sometimes life is just so heavy. So intense. So overwhemling. That it brings out the recluse in me. Like lately. The thing is...I know it'll pass. It always does. And I'll learn something. Grow. Hopefully. Survive. Certainly. Because I have to. It's just right now. In this particular heavy moment. I would much rather run away to some tropical paradise and sip martinis until Jonathan calls to tell me Trevy's back at home. Happy. And seizure free. With a new head of curls covering the scar and bouncing around the house. I am a coward after all. I've never denied that. And I really don't want to live through this next month. Which is probably why my posts will be random. At best.

I sure hope...

they grow back curly! Saw the "unknown" flashing on the face of my cell phone and knew who it was. Who it had to be. Dr. Fellow. My eyes met Grams' and I nodded. Grams has a pool, see. For super hot days like today. We're also having a septic installed. Which meant no water or facilities at my place. But those weren't really the reasons I was there. Close to mom. The purple ringing thing in my hand was. Only I wasn't prepared for it to be ringing SO darn soon. Shortly after lunch instead of dinner! I swallowed. Took a deep breath. And clicked connect. Dr. Fellow has a very nice phone tone. Clear. Hint of compassion. If only a stitch of humor were added...it'd be heavenly. But there was no humor. Just business. He's very direct. I'm learning that about him. Which explains his short hello. Followed by immediately pushing into the news. Being that it was a unanimous consensus. The entire surgical committee feels Trevor is a good candidate. And then p...