VNS Turn-on and Increase
We made the trip to Seattle and back, in a day, yet again!!
It’s officially turned on and starting to learning Malia’s brain activity. While we were there, Malia tolerated the turn-on and low voltage perfectly fine. We asked Mei if she was ok to turn it up to the next level during the visit, so we could cover her SUDEP more, and it would overall shorten the titration period for her. Malia is such a little warrior and agreed!!! She felt fine with the second ramp-up, but when we magnetized her, there was the voice change we had heard about. It is only for the 30 seconds that the device is sending out a higher frequency after the swipe, but it was a weird thing to watch and hear.
Titration will take about 6 months and the therapeutic level will be reached (hopefully if everything goes to plan). In about a year, we will see the full results of what this device can or is managing for her. * we still have a journey ahead and i’m sure it will be filled with excitement and new challenges! But dang! Im so glad we are here now.
We also discovered that instead of 5 types of seizures, Malia now has 6. With her genetic mutation, her seizures are ever-changing, and they don’t always look like a seizure would. We think she has been having these new ones for several months now, the Epileptologist has diagnosed them as cluster focal seizures, and Malia’s last anywhere from 30-60 minutes. These are now the most concerning for her doctors because they have been undiagnosed and last a very long time. Meaning her brain in working too hard for too long, too many days. Her postictal can be 5-6 hours of fatigue with nothing but sleep after these events, and you can tell it really just drains her of everything.
Here’s to the VNS device implantation, activation, and titration!!! We are hoping for improvements and supporting the path- whatever that means next.
NEXT APPOINTMENT IN 2 WEEKS!
