Today we’re checking into Children’s Hospital for J’s biannual EEG. We’ve been anticipating this for…well, for about 6 months, since his last EEG so we can get a better grasp of what’s going on for him. His last EEG, July 21, 2010 showed him still having 50% of his REM in spike and wave activity, meaning he is having seizures or precursors to seizures for 50% of this sleep. Not good.
Med changes, and here we are, December 14th. We know he’s not to 0%. His behavior and sleep alone tell us this, not to mention language…but it does give us more information.
The hardest part of this, besides remembering what to bring each time, is that we have to put him under. He refuses to allow leads to be placed on his head. He fights, struggles, with all his might and then, after 30 minutes, he passes out, vomits and falls asleep. So, under general anesthesia he goes, every time, two times a year.
I hope we chase this down soon enough so at the bare minimum, these trips can stop.
