Thursday, December 1, 2011

Neurologist Update

I am happy to say that I truly liked the new neurologist. (an answer to PRAYER!)

He wants to review the 72 hour video eeg for himself (instead of just relying on her former neuro's notes) Which I appreciate for sure. He wants to be certain what type or types of seizures they are. According my my description of them he feels they are tonic seizures. He is afraid that she might be having a couple different types of seizures and feels more comfortable reviewing the eeg to be sure.

For now we are doing 3ml Keppa in the am and 3 ML in the pm. He is not sure Keppra is the right drug.

Rett families - He mentioned that Tonic seizures can be tough to manage and mentioned the drug Banzel. Do any of your kiddos have experience with Banzel?

(sorry for the old picture but this post needed her cute smile don't ya think?!?!)


Chiot's Run said...

Such great news, I bet it's such a relief for you! Hopefully he's able to find the best drug to manage her seizers! So happy that you liked him!

Lauren said...

Hi Kelly, we tried Banzel for Molly who also has tonic seizures. It got rave reviews as a great drug with low side effects....unfortunately it did not work for Molly, but on the bright side she never had any side effects from it either! It was about 1.5 years ago so maybe they have different types now, but when Molly was on it it only came in a pill that we had to crush up and sprinkle into her food--and it tasted yucky. That was pre gtube, think it would be much easier to find a way to stick it through the tube for Brooklyn if you end up trying it--maybe a pharmacy can compound it for you?
Anyway what did work for Molly is trileptal and depakote, seizures controlled < 90% of the time and no horrible side effects that we noticed on she got used to her dose.
The new neuro sounds great, I hope you get the answers you need!

mj said...

I'd love more info on this as you get it. Leah's having what they call clonic tonic seizures (because she's stiff and sometimes she shakes) and is on 2ml keppra am and pm. she'll go a good week with no seizures at all and then one day she'll have 7-10 (10 is our max so far...thanksgiving day...ugh). so i'm all ears!