(NOTE: Forgive me, but I started this post on August 19th and never posted it. Well, then.... so much has happened since then. BUT, just to help you get caught up, I'll post this one first, anyway....)
Well, here we are. On the cusp of night #2 of the inpatient EEG. Chris arrived at the hospital yesterday, which was mostly uneventful. But going off Tegretol cold turkey was the plan, and as expected, the seizures began around 5am, as he slept. During his awake hours today, very little happened but Chris has already told me to be prepared for a long night; he's feeling the storms in his brain going on constantly.
These simple partial episodes are just a warning of what's to come. The complex partials are on the way. Hoping and praying for no tonic clonic tonight. Those freak me out more than necessary.
We are here for Phase 1 of the Brain Mapping Program and for a safe medication switch, when the high dose of Tegretol will be exchanged for Trileptal in an attempt to keep side effects at a minimum. Ultimately, the goal will be surgery to remove the seizing part of the brain.
The staff here talks about the miraculous results of seizure-free patients after surgery. One PCA who has been in this department for nine years had goosebumps as she told us about the young people Chris's age who have been rescued from the grip of their seizures and now live life with no seizures and no meds.
(Footnote: Chris stayed in the hospital for 6 days for this initial brain mapping, and had hundreds of seizures. He had many visitors and could get out of bed and go as far as his "tail" of wires hooked to the EEG would allow. A team of doctors met in September to discuss his case, and determined they could move on with Phase 2 of brain mapping, which involved implanting depth electrodes in his brain to find where the seizures originate. It's a long process, but Chris is ready to move full speed ahead!)
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