Wednesday, June 8, 2011


Since the beginning of 2011, Will has been averaging one seizure a month. This whole thing is so strange to me, because prior to June 2010, Will had never had a seizure before. Now it is a regular part of our lives. Apparently this type of late onset isn't atypical with people who have significant brain atrophy, as Will does.

We have been meeting regularly with Will's neurologist to figure out how to get things under control, and have been increasing his seizure medication to try to get the monthly seizures to stop. Will's doctor added a new drug, Keppra, after Will's last seizure in April, because it works well in conjunction with Will's existing seizure medication.

We realized this past week that it had been 5 weeks since his last seizure. We typically don't talk about things like this when we realize them, because we always seem to jinx a good thing by talking about it. But we were so happy that we had broken the monthly seizure rule. The Keppra seemed to be working well.

We had a neurology appointment on Monday to check some medication levels and sing the praises of this drug regime for Will. Smiles all around. Will happy. Mommy happy. Daddy happy. Doctor happy. Happy, happy, happy.

When will we ever learn?

I was catching up on some work last night when I heard Will sputter from his room shortly after bed time. I knew what it was before I walked in the door. Nate was out taking Otis for a walk. Thankfully Will didn't vomit, just a cough. But he was having a seizure.

I walked him out to the living room and cuddled and sang to him on the couch as the seizure took over his body. Unresponsive. After 5 minutes, I administered his emergency seizure medication intranasally. We continued to sing and sway as the medicine worked its magic. Will's seizure subsided shortly before Nate and Otis got home. Thankfully it was a short one. We didn't need to go to the ER. We all slept fitfully the rest of the night.

Frustrating. Back to square one.

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