The seizure Josh had on Tuesday was too brief to yield any information on the EEG. It may, however, be useful for comparison purposes at a later date, when Josh has a full-blown seizure. To regroup: its been 10 days off anti-seizure meds, two nights of sleep deprivation, and several photic stimulation events (flashing lights), but no measurable seizures. The only other time Josh has gone this long without a seizure was last July after his first surgery.
Josh is getting frustrated and bored. The rec therapist has Josh doing all sorts of arts and crafts projects and we're trying to keep him entertained, but it ain't easy. We're hoping to find him a Super Mario video game, which normally provokes seizures.
I think we have all hit some kind of a wall. Ten days is probably the limit to how long we can stand being here without losing our minds and going stir crazy.
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None of us can imagine what your days are like - it feels like ages since we've seen you all..... go find that Super Mario game and keep Josh up all night long!!!!!! Stay strong- you are ever present in my thoughts. xoxoxoxo Amy T.
ReplyDeleteI cannot imagine how frustrating this must be. Can't they pull out the big guns? Isn't there anything else they can (safely) do to provoke a seizure? I agree with Amy, video games all night long! I'll be out of town for several days but will be praying for some seizure activity while I'm gone. My best to all of you.
ReplyDeleteJulie
Jerry, Rbyn and Josh,
ReplyDeleteHANG TOUGH!! If Josh has had one seizure it must mean that there are a lot more waiting to get out. It is like the penguins lining up at the edge of the water waiting for one to go first and then they all let loose. Hopefully that will happen for Josh soon
We love you all.
Amy M.