This VNS business works kind of like medication. It has to be increased to "therapeutic levels" just like medication. We went for our second visit to increase, but I had done some research on the device and found out you can increase the frequency and the strength independently or together. Right now Christian's VNS has been increased once and it goes off every five minutes.
Because of the nature of Christian's seizures - they're about 1-3 seconds long and happen frequently (as in myocolonic seizures) throughout the day, if you blink you might miss it) - I suggested to the doctor that maybe we could try increasing the frequency instead of the strength this visit.
The doctor, who's an epileptologist here in our city, was in total agreement. So we went for frequency instead of strength this time and now it goes off every three minutes. We'll go back in two months to do another increase, if needed.
I haven't seen any visible differences with the jerks that have wowed me yet, however, I have seen some notable cognitive improvements and he seems way less irritable. I don't know if the two are related but I'm thankful for positive changes in any package they come in! Can I get an amen?!
So I promised to post a picture of what an "increase" looks like...
A lot of beep-o-bop-o-beep and blinking lights and it's done. Space-agey, huh.
(And, please notice the fabulous sitting position I have him in. Second thought, don't notice it. Look away and just know it only lasted for a minute.)
For those who like scars, Christian's got his own collection of them.
The main scar four weeks post surgery. His VNS lies right underneath and you can feel it. It's like a little police badge under his skin.
This is a picture of all of his upper hemisphere scars.
And here is the same picture with a diagram of Christian's VNS scars. Please excuse the 1st grade level handwriting by yours truly, courtesy of the Paint program. Keepin' it real.
You'll see where I labeled a "wire" that connects from the VNS device up to the vagal nerve. You can slightly see it as it resembles a strong vein in his neck.
I have to say, though, that I am loving this time right now with Christian. He hasn't been as upset as he used to be with the nonstop evening-time crying. He's been really alert and aware and I'm loving it. He's also been vocally communicating more without crying, which is awesome. I was holding him on my lap the other day and I looked down and noticed there was a little boy sitting on my lap instead of a baby or even a toddler.
Know what else I love? When I go up to him and say his name and he looks over to me. Or when I come to pick him up at school and he hears my voice and he looks for me.
I caught this listening to mom's voice phenomenon here.