Tuesday, September 8, 2009

Start Banzel (Rufinamide)

Thank goodness Reagan slept well last night! The night before was rough, so I was concerned about her having a repeat performance. She woke twice and cried out, but by the time I got to her she was already back asleep. Today we started the Banzel (medication #14)...only 1/4 tablet (50mg) once a day to start off. I think that's a very low dose to begin with but our doctor seems to be very conservative when starting Reagan on new meds. So far, I haven't noticed anything. Seizures were nasty again this morning. I went ahead and video taped her about 30min after waking up and in only 1min I captured all of her seizure types (sorry it's not the best quality so it's a little dark and hard to see). Lots of twitches, those happen all day but are especially bad in the morning (you'll see them in her arms and legs). Then at 30sec she has a spasm. Those have definitely decreased but are still present throughout a day. Then at 53 sec she has a nasty myo-tonic...these really leave her dazed and seem to upset her (and me as well). It's hard for me to go back and watch. I see this all day long, I hold her as she has them all day, everyday. But for some reason it's even harder for me to look back at them and see her struggling all over again. I just hope and pray that one of these medications will finally provide her some relief from these horrible things. I want Banzel to be the one. Please say some extra prayers for my little one.


Dawn said...

I will definitely be saying extra prayers that the Banzel is "the one". Thank you so much for responding to my question. I'm going to discuss the use of Banzel again with my daughter especially since she has Lennox-Gastaut.

I appreciate you sharing your journey here. Thank you again.

Rhea said...

The video broke my heart. I am praying so hard that this is the medication that will stop these seizures. My prayers continue for you too - so hard to watch your baby have seizures. It's makes me cry when Anna has them. She has been seizure free for a week with the vitamins. Only on 1/2 cc of valproic a day. Soon we will be off of them. Hopefully she won't have any more seizures!!! Talk to you soon.

Holly said...

Prayers that Banzel is the miracle you have been praying for.

Hugs to you and Reagan!

Jamie said...

I know its so hard to have patience I am waiting over a week for madie's EEG! Give the med some time and only time will tell.
Lots of prayers..

jocalyn said...

Oh my gosh, that is heart-wrenching. Praying Banzel is the one.

Kendall's spasms look exactly the same, and her latest ones look like those myo-tonic ones(clustered together...and make her [and me] very upset)


blogzilly said...

Man, watching anyone's child with this stuff is heartbreaking every single time. You just never quite get used to it at all.

Hope the Banzel is THE thing...

Kristine said...

Reagan is such a little sweetheart. Watching her have seizures is absolutely heartbreaking. I can't believe what she has to go through on a daily basis.

My daughter had lots of seizures when she was ill (meningitis), and it just about killed me. I can't imagine how difficult it must be for you to watch. I'm pretty sure I'd be a big crying mess every day.

I'm saying lots of prayers that the new drug will be the last and successful one.

Give her a big hug from me!!

Debbie said...

I really am hoping and praying this is "the drug" to banish these awful things. Remember it takes a while to see the full effect of the drug. we titrated up over three weeks and Hudson's max was one pill in the a.m. and one at p.m. So after 3 weeks we knew how it was working.

The seizures, heart-wrenching,sorry you shoulder the burden of seeing those horrible monsters...hopefully they will diminish as your precious angel gets the new med.

Praying like crazy for you guys!

nytxrider said...

Hello. I am so invested in hoping patients do well and wonder how Reagan is doing. Did Banzel help? It seems that and some others would be a good combination but she must be on polytherapy?
Just wondering on an update?

Reagan Leigh said...

Yes, Banzel was "the one"!!! Banzel (in combination with clobazam) eventually stopped Reagan's seizures! She was seizure free for many years on this combo and it is only with the onset of puberty that we have started to see some break through absence seizures.