Tuesday, February 17, 2009

Testing update...

So I talked with Ruth (Dr. Chugani's nurse that knows everything and anything about the surgery process) last Friday. The only test worth repeating right now is the 24 hour video monitoring EEG. Until the EEG shows a focus, none of the other test matter. Even though all the other tests show only left sided abnormalities, there is no way of knowing if that is truly where the seizures are originating until the EEG shows it. As all the other tests are just not enough evidence to go forward with surgery. So after Ruth discussed it with Dr. Chugani, they are okay with us having the EEG done locally so we do not have to travel out of town. I spoke with Sophie's local neurologist last night and he is going to set everything up. He also brought up trying Banzel (thank you Jen for mentioning that to me in one of your comments or else I would have been clueless). So we are now leaning towards starting Sophie on it. It is just a matter of whether we should start her on it now or after the EEG.


Reagan Leigh said...

We were thinking about trying rufinamide next too, but our doctor said something like it's not available yet. I don't know. I sure hope you can find something to help sweet little Sophie...she's dealt with these seizures for way, way too long!

Katie said...

we started Rufinamide (banzel) just before going to Detroit last week. It's been a good drug for lily; we're definitely seeing a decrease in spasms. nothing seizure free yet, but fewer = good in my book!

JSmith5780 said...

Of course if you re-read my comment, as you can see, I didn't realize Banzel and Rufinamide were the same drug :)

Regardless, I really hope this drug proves to be useful for all the kids!

Anonymous said...

That is more good news. Having the EEG locally has to be less stressful for everyone than a trip to Detroit. The anticipation and plane travel alone must be anxiety ridden. Sophie will spend more time in a familiar environment and in her own bed. That even makes me feel better. Sigh. There's no place like home.


catsmum said...

Hello, first of all Sophie is so beautiful and her blog is great.
Has Sophie been tested for Cdkl5?
This is a newly recognised gene that can be responsible for Infantile Spasms.
Please have a look at http://www.cdkl5.com

hugs to you all from a Cdkl5 mum