Friday, April 20, 2012

Lennox-Gastaut Syndrome

During our first few days in the hospital, Elisabeth was diagnosed with Lennox-Gastaut Syndrome (LGS). This is a severe and rare form of epilepsy that is typically very difficult to control (which explains why we haven't had any success with the millions of meds we have tried her on).

So they decided to start Elisabeth on a new medication called Onfi. Onfi has only been available in the US since the beginning of the year and is targeted at individuals with LGS.

Now for the exciting news...

Ever since starting Onfi, Elisabeth has been


Seizure Free!!! Can you believe it?! I can assure you, it's hard for us to believe...but it's true! Normally, Elisabeth has seizures every hour of the day. And now, nothing. Not so much as a little jerk.

It's amazing. Absolutely amazing. This is the first time since Elisabeth was 6 weeks old that we have seen her seizure free.

So I say, three cheers for Onfi!!!

Hip hip hooray!
Hip hip hooray!!
Hip hip hooray!!!
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