Ben’s been in the hospital for 12 days now. He had 12 seizures over the past two days, several of these occurring while he was sleeping. The seizures are coming from both sides of his brain so he is not a candidate for surgery.
We will be coming home tomorrow if Ben can remain seizure-free overnight. The surgeon is supposed to be coming in later today to remove the electrodes from Ben’s brain, which he will do bedside.
We are sad to learn that surgery isn’t an option to treat Ben’s epilepsy. But this experience has really helped Ben learn how to identify when he is having seizures. Whenever Ben felt like he was “maybe, perhaps” having a seizure, the EEG confirmed this experience for him. Ben is getting more skilled at identifying what it feels when he has seizures, which is certainly a benefit of this hospital stay.
We will continue to try to experiment with different combinations of medicine to try to control Ben’s seizures. Ben will also go on a modified Atkins diet which has been helpful in controlling seizures for some patients. And finally we will eagerly await the FDA approval of a device called NeuroPace RNS, a modified pacemaker that is implanted into the brain and used to control seizures. The doctors have said that this device is effective in helping patients with seizures coming from both temporal lobes. They expect that it will be approved by the FDA sometime in 2011, and the doctors seem hopeful about this being an effective treatment for Ben’s seizures.
Again, we thank you all for your kind prayers and comments. I will continue updating this blog with fun family anecdotes, random thoughts, Scripture, and quotes from rock music (I seem to have an eclectic assortment of inspirations for my quotes!). I hope to post less and less about our medical issues. We are so thankful for each of you. Thank you for your prayers, your kind comments, your visits, and all of the care you have shown us. If you want to find us, we hope to be in our own bed tomorrow night!