Unfortunately, Parker has been having more seizures lately. Fortunately they have been short. Short yes, but, not too sweet. Unfortunately, they have left more lasting effects than some of the longer seizures. So my take is that the VNS is stopping the seizures, which is great! The only problem is that the seizures are leaving him lingering in nausea, weakness and sleepiness. We have also been experiencing some new after effects. After the seizure stops, he continues looking as if he is just about to go into another seizure. His head stays turned and eyes are fixed into his seizure stare, and the last one caused him to continue having small jerks for about 10 minutes. After seeing the after seizure period of time continue to get more intense, I called the doctor. We turned up the VNS strength and we are hopeful once again for success. Now, this is just a guess, probably a somewhat educated guess, but a guess. I think that the VNS stops the seizures and then the seizures find a way to break through, like with the medications we have used over the years. So, then it is necessary to turn the VNS up again to once again attain a successful suppression or stopping of the seizures. I am still hopeful that we will find the right strength that the seizures can’t overcome.
With the medications, we continued to go up and then Parker would have a bad reaction to the strength or for some unknown reason his blood levels would show he was too high or low. Before deciding to get the VNS, he began having night terrors and daytime depression from his medication levels getting too high. We would adjust the meds down and once again he would have more seizures and harder ones. It is definitely nice to not have to keep playing with the med levels. He is still on 2 medications daily and has a medication for illness and danger times which cause seizure venerability and we have a rescue medicine for a time when we can’t stop the seizure. We are definitely lucky to have never needed this rescue medicine. Even before the VNS, we were fortunate enough to have all seizures end within the time we were told to begin giving the rescue med. We are a long ways from being medication free, but, at least we don’t have to keep playing with the levels and we just concentrate on the VNS.
One thing that is new for me is that we can use the magnet and swipe the VNS, even after the seizure has ended. In the past, I was told to swipe the magnet to stop a seizure and only use the magnet for the obvious convulsive seizures, not the absent, stop and stare, seizures that he has lots of. Apparently, swiping the magnet after a seizure will reduce the after effects. This was good news, especially since all the recent seizures have stopped on there own and left the effects to linger on. If you are not familiar with the VNS, vagus nerve stimulator, it is a small unit like a pacemaker that is implanted in the chest. It is sensitive to magnets and swiping a magnet over the unit causes it to stop and start up. When it starts, it sends a message through a wire to the brain, which in turn stops the seizure. The unit is also set to go off and on at regular intervals so as to prevent a seizure. Parker’s goes off less than 2 minutes continuously. Things are definitely looking positive with the VNS and I feel sure we will find the right levels to become seizure free or at least close to it.