Originally posted 2014-10-28 21:19:24.
You live with someone who has seizures you are always on the look out for the next one. In Dusty’s case we never know if he is sitting there having one don’t realize know it. We have been trying to figure out just how many seizures he is having so that the doctors can try to better control them. It’s a constant battle. I love my child but there are plenty of days that I scream ENOUGH! I can’t do much of anything without having Dusty there. I admit that I could watch tv or something in my room and maybe Dusty be in the living room but I would have to go back and forth to check on him. That is about as much of a break I am getting lately. Seems a lot in comparison to other things we have had to deal with but with all that’s been going on its more of a mental strain. I always have to have that 3rd eye and ear to him and whatever he is doing. He will do things that sometimes make no sense to us but otherwise make sense to him.
For this week I will be paying much more attention to Dusty and his movements because he is taking an EEG study at home. He was hooked up on Monday morning along with the camera that will be recording him. With the exceptions of bathroom breaks and other times he is out of view. It is even recording him with night vision to ensure they can view his movements and then compare them to the EEG readings they get from the monitor. I find this technology helpful since doing this at home in a more comfortable setting than a medical facility. Granted some of those settings are set up to make it feel as if you were home having the televisions, video games, the nice bed but you know it’s just not home. This is the first one he has done at home and for 72 hours. Knowing the random activity that can occur I am truly hoping this is a good view into what may be going on. I know he is having seizures even while on three different seizure medications and on a medication they would give him in the event of a prolonged seizure, Lorazepam. But we just aren’t sure just how many he is having and how severe they are.
Today he woke up and then fell asleep within 2 hours. Now we don’t know if he had a seizure during his sleep last night but will eventually find that out once the results of all the read outs are done. He had laid down and pretty much seemed to be sleeping peacefully but if he did have seizures then maybe he just had a lot of interrupted sleep. There are days when he won’t wake up until 11am or almost noon and that is even after going to bed before 10pm. With the grand-mal he had during the summer is any indication of it then it could be they have worsened. There comes a point where do I let the doctors add more medications to the pile and then he is so drugged up that he is zombiefied or what? I know the doctor did mention ‘quality of life’. But in the meantime we just have to try to figure out just how many he is having. Trust me when you see a doctor do a double-take it really makes you wonder when you look at him if he is seizing or not. All the various body movements, jerks, etc it really makes you think, was that a seizure?
So for now I will just monitor this as much as I can and pray that we can find a solution that works without making him miserable. I knew a long time ago at some point in his life his health would worsen. I knew that his seizures could someday get worse but you never honestly think about it until it starts happening and then you are wondering if this is as bad as it gets? I realize they could get a lot worse but for now I am taking nothing for granted.
One last little bit of sunshine this past week has been Dusty finally glad he got the flu shot. I have never seen someone so glad to get a shot as he was. You can see he was grinning from ear to ear.