28 Mar
I thought I would give you all an update about our 3 year old Owen.   I think most everyone knows that he was diagnosed with epilepsy last September after a series of seizures.   We have been trying to find medication to help but haven’t had much luck.
We recently had some additional testing done and the MRI showed a brain injury in the pons area of the brain.   They don’t know what happened, maybe I was sick while pregnant or something else.   Owen was pretty much sick all of his first two years so it isn’t much of a surprise.   Anyway, think of the damage left by a stroke and that is about what it looks like–a little shadow dead area.
The good news is that this gives us a better idea of the kind of seizures and where they are coming from, so we can better target treatment.   We now believe Owen has focal seizures–starting from this one place and primarily affecting his right side–that then spread or generalize so that his whole body shakes.
Right now Owen has a few seizures per week.   He is getting better at noticing the warning signs and letting me know, like if he hears sounds in his ears or his stomach hurts or the light bothers him.   The goal is to get down to zero seizures which would be nice, but who knows.  He has a lot of right side muscle and reflex problems which I don’t want to get worse.


I think that covers it.  My brain is always on seizure alert with at least 35% of my gray matter.  I’m hoping that will change if we ever get to a nice stable situation.


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