In the interest of fellow parents following along with the seizure part of things, here’s today’s email update to the neuro nurse. It’s my first time in awhile sitting down with the numbers and a calendar to add up weekly totals. I always meticulously document each day, but clearly need to do this big-picture analysis more often. I’m guessing the reply might be to go back up on clonazepam and see if the tonics go back down. Sigh.
I should also mention we’ve all been sick this week so that could help explain the jump in numbers in the last while.
Lots of tonics lately. Here are my records so far.
M=myoclonic cluster (some ~2 jerks, some ~15), T=tonic, D=drop. I left out the screaming ones but he has roughly 15 of those each week.
week 1: 29M, 2T (tonics new)
week 2: 35M, 2T
week 3: 22M, 4T, (clonaz decrease)
week 4: 11M, 4T (clonaz decrease)
week 1: 7M, 8T
week 2: 14M, 2T (clonaz decrease)
week 3: 15M, 9T (clonaz decrease)
week 4: 10M, 17T (clonaz decrease)
week 1: 6M, 23T
week 2: 9M, 21T, 3D (drops new)
week 3: 14M, 41T, 1D (clonaz decrease + clobozam started)
He’s now at 1mg AM/0.75mg PM for clonaz and 5mg PM for clob.