Seizureville

Well we are back in seizureville...and today, Maura has had 4 seizures...the most she'd had on any one day since coming home from the NICU. There have been several seizures over the last week.

There are no answers...we try things and hope they work. They don't know why and there is no definite way to stop them...so it's like mixing up a big old cocktail of meds and hoping that something will work.

As you already know, we are trying to get Maura off phenobarbital. We don't HAVE to do this, but it's in her best interest. So we are trying to stick to our guns on not upping it. The doctors aren't pushing it right now, but we know it's an option, dangling out there if we want to grab it. We are almost a week into the 6 week process, and I really don't want to step back unless it's our dead last option.

Today, we decided to up her Keppra, which has never been weight adjusted since we left the NICU, in hopes that it will work. It takes a few days to get things working IF they are going to work.

We are noticing that her seizures are becoming specific to waking up. It doesn't really mean much, but at least we know when to look for it.

I'm tired, and Joe goes back to school next week. I'm hoping the increase in Keppra does the trick. This is not fun.

Thank you for thinking about Maura today. Hopefully this will all calm down soon!