Plan for Roxanne

Roxanne was diagnosed with epilepsy (specifically, infantile spasms) in October, 2006. We went to see Dr. V, the epileptologist at Johns Hopkins in November, 2006, and the team left off saying they would have the neuroradiologist review Roxanne’s MRI, and would be in touch. When we called back weeks later, the radiology people had yet to review the MRI. In other words, we fell into a black hole of disinterest.

Changing tack, Roxy and I went to see Dr. P, the epileptologist from Children’s on January 2nd. A week later, she got another, more detailed, MRI. A week after that, we met with the neurosurgeon. Talk about interest and attention! Whoo!

The epilepsy team at Children’s includes four epileptologists (pediatric neurologists with a specialty in epilepsy), a neuroradiologist and two neurosurgeons. They reviewed Roxy’s case (old and new MRIs, old/new EEGs, history of seizures, drugs taken, etc.) and unanimously agreed that surgery is her best option. (Can I note how cool it is that a whole team of brilliant people reviewed Roxanne's case? Very.)

Dr. Y, the neurosurgeon, used the recent MRI to show Dan and I the area of abnormality in the right parietal region of Roxanne’s brain. It’s about the volume of a ping pong ball, and they hope that by removing that area, Roxanne’s seizures will decrease dramatically or even go away.

While it doesn’t feel like the idea of brain surgery is good news, it is. Roxanne isn’t responding to anti-epilepsy drugs, and statistically, if she hasn't, she won’t. Her seizures and the medications are slowing Roxy's development, and can eventually cause permanent damage. I hear our situation is what families of kids with epilepsy hope for. Huh.

Of course there are risks with the surgery, and yeah, I’m freaked out. But the studies show that not doing the surgery, and Roxanne continuing to have seizures every other day, will most certainly cause her to be developmentally delayed. Studies also show that this type of surgery can be very successful.

So. The surgery is scheduled for the week of February 12. They say she'll be in the hospital for a week after the surgery, which I find hard to believe -- only a week? I don’t have a lot of other details yet, and frankly, I’m not sure I’m ready to hear all of them. God. Brain surgery.