Since I have had some time on my hands and have had the opportunity to spend some time with my son, I have learned a little bit more about my son’s medical conditions.
My son has not had any seizures for over six months or longer. Up to now it has been difficult to tell because sometimes his non-epileptic seizures look like seizures. I am now pretty confident that the seizures he was having when he was younger are no longer happening. In those days his seizures always started with his eyes and head, and sometimes traveling on to other parts of his body.
Since I was going to be home with him full-time for awhile, I decided to slowly reduce his epilepsy medications. He was on depakote and tranxene. He has now been off both of these medications and has had no seizures. This is big for him. Eliminating these medications removed at least one ball and chain from around his neck.
He still has his VNS, which may be still providing some control over the seizures. We are approaching the time where we will need to change the battery in the VNS. He has had it since 2004 and it is about due for the battery to be dead. It will be a big decision to decide what to do. At times my son wants the VNS out. He doesn’t like the look of it in his chest and at times it will hurt him,which I suspect is from scar tissue. The last time he saw his neurologist he asked if it could be taken out. The doctor said we would talk about that when the time came.
My son also has this concern about having it in his body and that it prevents him from being “normal.” A year ago his someone made a stupid joke that he should be careful before the doctors turn him into a robot. Dumb joke. My son took it very seriously.
On the other hand, my son has mentioned that his VNS has always been with him. He is thirteen now. He questions whether to remove it because it is a part of who he is.
Decisions, decisions. We will see what happens next. It is wonderful having him off the medications. It will be interesting to see if there are improvements in his life as a result of getting away from the side affects of the medications. No more drowsiness. I wonderful how this will impact his learning. He is way behind in most of his classes. Is it possible that some of his learning disabilities were caused by his medications, or at least contributed to his learning difficulties? I guess we will see.
So now what’s next? The neurologist doesn’t know we did this. I am not sure what his reaction will be. I am also curious what my son’s epilepsy status will be labeled. Does he still have epilepsy? Is there a period of time when one is seizure free and one is no longer considered to have epilepsy?
This is a big change for us. When he was younger he was having cluster seizures twenty or more times a day. His seizures were sometimes triggered by bright lights. It had a big impact on all of our lives. And now, it appears to be over. I wonder for how long will I have my guard up? I am always watching, looking for that unusual eye blinking which indicated the start of a seizure. It’s an odd feeling. Waiting. Hoping nothing happens. Watching for any sign. I want to celebrate the moment, but am afraid to, in case it sneaks up on us again. Perhaps with more time this anxiety will go away. Lucky for my son he usually isn’t even thinking about it. Good for him. It s my job as his mom to carry that burden of concern. This way he can just live his life. I am so happy for him. We have plenty of time to celebrate.