Wednesday, April 1, 2009

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.


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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.


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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.


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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!


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

6 comments:

~Mama Skates~ said...

here's 2 hoping this one is trevy's miracle drug!!!

xoxoxo,
sharon

Monica, James, Connor McGuire said...

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.