VNS Remote Ramp-Up #1
Welllll kinda #2- When her device was turned on we went from round 1 to round 2 because she was tolerating it well.
WALL-EEEE, EVAAA. This is now the fun thing to say, and trust me, we hear it A LOT!
Mei had her first remote VNS ramp-up last night at 4:04pm. It’s an automatic increase in the amperage in the device based on the schedule we input during the turn-on visit.
As you can imagine, this time Malia noticed what feels like a bubble in her throat, and then comes the ‘robot voice’. We use this time to talk like robots, and one family favorite is the movie Wall-E. She could be considered a voice double- she’s that good!
The amount of these voice changes and bubble feeling was pretty odd, though. The way it’s set up to run with this dosage of amperage is: Normal Mode- goes off every 5 minutes throughout the day. Auto-stim would override that mode if it detected a seizure was coming; it would send a higher amperage single for 30 seconds, and then go back to normal mode. If we used a magnet at this stage, it would override the normal mode, auto-stim mode, and go into an even higher amperage single for 60 seconds, resting 60 seconds in between. (Phew, that was a lot)
Last night, Malia was getting a voice change every 5 minutes for 30 seconds- her normal intervals at this stage. Her voice change and bubbly feeling could just be a part of her body adjusting to the new increase in amps for several days.
Then, as we started timing things out, she would get a bubbly feeling and voice changes every 3 minutes, lasting 30 seconds. It feels like the device was detecting a seizure onset and overriding the normal mode. This went on until she went to sleep (possibly continued while she was sleeping). When I woke her up for school, it started happening again as it did last night. It would go off every 5 mins, or it would go off every 3 mins.
Right now, I’m glad we can play around and have fun with how often its happening and its not completely bothering her. But it’s something I need to get figured out.
