EEGs, Phenobarbital, and What it All Means

Maura - 5 days old - second EEG, first at CHOP

When Maura was just 40 hours old, she suffered her first seizure. What happened that day led us on a path we'd never expected. It was also the first day she was given Phenobarbital. It's quite a beast of a drug. It's an addictive barbiturate. It can lead to learning disabilities later on in life. And it just wasn't a drug we hoped she'd be on forever. Last month, when Maura had three days of breakthrough seizures around the 4th of July, they increased her Phenobarb dosage. I was dismayed....disappointed that we wouldn't be weaning her off this beast like we had discussed just a week before. But I reminded myself as I gave her the increased dosage that it wasn't forever...we hoped.


Maura - Today

Today, Maura had an appointment with neurology. I didn't quite know what to expect because of her breakthrough seizure on Monday. I wasn't even going to ask about weaning because of it, but after looking closely at the picture, the doctor had other plans. You see, we also had an EEG today. Previously, I had thought What will they even see on an EEG if she isn't seizing...after all, they've used the video EEG just to determine if she was seizing during some of her NICU time. But I was wrong, and it all came back to me like a vague memory that I should have been able to know they'd see something. The tech said it would show up as abnormal if they saw anything unusual. The neurologist said it was normal!



Her very first EEG, at Virtua, the first of four so far, even showed abnormal brain waves without seizure activity visible...so to have a normal EEG was HUGE!

So what does this mean? Well, considering the seizure on Monday, we are making a weight adjusted increase on Maura's Topamax. However, she started the 6 week weaning process from Phenobarbital at tonight's med dosage. She'll also be staying on her lowline dose of Keppra for now as well (which hasn't been adjusted at all since she was about 6 pounds, did I mention she's also doubled her birth weight and now weighs 12 lbs 11.9 oz?!!)

So for the time being, we work on weaning. Please keep Maura in your thoughts and prayers on this next milestone and hope for the best. Hopefully, we can move on past at least one of these drugs sooner, rather than later without more breakthrough seizures.