
OK, so you know Bennett has these seizures. While they are not like myoclonic-astatic seizures or atonic seizures, those which cause you to fall to the ground suddenly, these IS Clusters can and often do, and even more than they used to now, begin while Bennett is engaged in play, while walking around, doing anything a so-called 'normal' child might do.
But, when these clusters begin now, and he is standing, one of two things will happen. Either the seizures will be so severe he loses his balance and falls, OR he will slam his head into the nearest object, which is OK if the object is a soft pillow. However, if the scrapes across his nose bridge today tell us anything, its that these clusters have a better chance of causing him to bang his head repeatedly into HARD objects.
And usually the edge of a table, which sucks as you can imagine.
Now, unless you are watching every move he makes like a security camera with a tracking ball, you might not notice that he is about to have the cluster until WHAM! his head goes into the object ahead of him or he falls to the ground. If he remains standing, another WHAM! may even occur before you can get at his side and guide him away.
Problem is that you gotta be there, because he loses awareness of self or something, because he isn't able to react to bumping his head the way you would if you ran into the table or object. He might not even register the pain the way we do, so he doesn't or can't pull himself out of the way or get to the floor.
What do I do?
This wasn't part of my Parental Manual, I don't know how to live our lives like this, without ever taking your eye off the boy. When Carter was a toddler, I was watchful, I was cognizant, I was paranoid even, but I could look somewhere else for a few moments without putting my son's face in danger.
Those of you who deal with the drop seizures, what do you do? Or do you really do anything because there is nothing you CAN do? I'd appreciate any advice, any suggestions, from those of you who have been at this a lot longer than I have. I bought some edge guard and am in the process of trying to cushion some areas that I might see as possible problem spots, but what else can I do?
Other than shake my head in guilt and frustration, which I can do very easily now, by the way...
Anyway...Happy Nuggets...I know...Happy Nuggets. Hard to sometimes. Rough day. Rough week. Rough year so far. So let's look at some cute pictures, from some that I loaded into Facebook today. Oh and as a side note...one of my greatest friends IN THE WORLD joined Facebook today. I couldn't be happier about that.



























































