Today we saw the seizure specialist at Thomas Jefferson Hospital. Corey’s last “quiet” seizure was thanksgiving eve. It caused facial paralysis to her left side with slurred speech. Fortunately, her muscles returned to full function within 12 hours thanksgiving day. She’s had some “quiet” seizure activity since but the last significant noted activity was six months ago.
We discussed our visit with the new doctors in DC and their recommended medication changes. Dr. S is in agreement with the teams suggestions but would actually like to ramp up the changes.
One of Corey’s seizure medications is Keppra. She is on 2000mg/day. In non-clinical corners, this medication has been coined “KEP-RAGE”. The new medication the DC team suggested is in fact an anti-convulsant. Dr. S likes the new medication and wants to work with Dr. K from DC to adjust the dosage of the new med and wean Corey off the Keppra sooner then later.
So here we go…I keep telling Corey that change is not a bad thing…but now I’m the one that’s scared!
Anytime we tweak medications she is at risk for seizures. Let me tell you, they are frightening to watch. Corey’s last ‘major’ seizure lasted 8 minutes. Since then, we have oxygen and sedating medication to administer if she has another seizure that lasts more then 5 minutes. Our local fire/ambulance is close by but if they are more then 5 minutes out we can’t wait for them and have to act quickly. Each ‘quiet’ seizure affects Corey; we’ve witnessed changes to her speech, her word recall and her physical strength. A ‘major’ seizure will cause significant regression to the strides she is trying to maintain and regain.
Seizures as a result from brain injury are unpredictable. For some patients, once the cocktail mix is correct, they are seizure free. Some can be seizure free for years and then randomly begin. Much like Corey’s daily question, “when will I be all better”…we have no idea what to expect. We can only hope the next 6 weeks of remixing her new medications she not only handles the changes without seizures, she will also become less anxious and less enraged.
Please pray for Corey as she goes through these next 6 weeks; new medications, botox injections and critical PT/OT strides to win insurance approvals…you know…just a few life changing challenges to face all at once…we’ve been up against worse, right? Oh, and if you wouldn’t mind, throw in one or two extra positive thoughts for me, Caitlin and our nurses. We are all hoping to watch Confident, Calm, Courteous, Caring Corey emerge…and if it’s not too much to ask…let it be done seizure free! xoxo