Are You Feeling Brave?

That was the question posed by Teddy's neurologist at his appointment last week, after he greeted us and asked Teddy how he was doing.

Seriously, he is the best neurologist. Even when our appointments are months or even a year apart, he walks in and greets each of us by name. He talks directly to Teddy and then uses his parrot Jabber to help with his examination of Teddy while checking his belly for Tigger and Pooh Bear. He's approach is amazing, not to mention that he knows his stuff and can explain things to us in a way that makes sense without making us feel stupid.

The reason for this neurology appointment was to determine whether we wean Teddy off Keppra, his anti-seizure medication. We had discussed it at his appointment in May but wanted to hold off past our 3-week vacation to the remote parts of our country. Now, in the midst of cold, flu and every other bug, we were faced with the decision.

Teddy hasn't had a seizure since June 22, 2015. That's a long time, which means perhaps his body has adjusted to be better able to handle that things (like fevers and illnesses) that caused seizures in the past. Or perhaps any seizure activity is simply prevented by the Keppra. The only way to know is to remove the Keppra and do an extended EEG to see what's going on inside that mind of his. (If only! At least the EEG is designed to see if seizure activity occurs.)

We decided to be brave, with a plan to wean him off Keppra gradually over four weeks. After one week of no Keppra, then we'll head in for ideally a 48-hour EEG. We'll be in the hospital basically for as long as Teddy will tolerate it. A standard EEG has a response rate under 50%. A 24-hour EEG has a response rate around 80%. A 48-hour EEG has a response rate around 93%. EEGs done at home have so much additional feedback that they aren't considered nearly as accurate.

Of course, when we got home from the neurology appointment, we discovered Teddy had a fever over 100 degrees. I think God has a sense of humor. Teddy stayed home from school that day but rallied to be well enough to head to school Friday. Saturday he developed croup. Seriously, God either has a sense of humor or is testing our resolve.

We will continue with the plan to discontinue Keppra, but we're waiting a few more days until he's over this crud. Then time will tell ... but I can't deny the thought of another seizure is terrifying. I'm hoping and praying I won't be making that type of post for a long, long time. Like ever. But I'm enough of a realist to know that it likely will happen someday.

I still can hope someday is a long time in the future.