Well after a long night and one IV infiltrate. He is at PET scan.
Saw lots of Doc's today and it's only noon.
His neurologist came by, I just love her, and said they saw some of the same "abnormal activity" on the EEG they have seen before.
It doesn't give a good picture of exactly where the seizures are coming from.
That's why she believes the seizures are coming from deeper in the brain.
Hopefully the PET scan will see where the seizures are originating from.
The way it was explained to me, the PET scan, takes pictures of the brain in slices.
So you can really see inside the brain piece by piece. They inject a radioactive glucose solution via IV that travels to the brain. The neuro said that it is thought that the area of the brain that has seizures doesn't metabolize glucose ie sugar that way it is suppose to. So on the scan if there is an area of the brain that is not metabolizing glucose it will show up dark in the picture
Interesting, I think....but I'm a science dork.
The one thing she brought up that I didn't like?
Tapering the Keppra to maybe catch seizures on EEG.
Meaning that, tonight's dose will be cut in half and tomorrow his Keppra will be no longer.
Yeah..... I'm still sick to my stomach.
As other parents of epileptics probably understand, the idea of this is so scary.
I understand why they want to do this from a medical standpoint, but as a parent it sends my nerves into over drive.
What brought Keppra into play in our lives was a summer of Grand Mal seizures.
He had quite a few and his other medications seemed to just be making it worse. I stomped my feet, got him admitted and they loaded him with Keppra. He obviously has still had seizures since then, but no more Grand Mals.
So of course my fear is that this will bring those awful things back. I'm sick with fear.
It doesn't matter that we will be in the hospital if something happens. They are awful to watch, just awful. They suck so much from Arthur.
The best way I can describe it is this......
I watch the Grand Mal monster drain the light from my child's eyes and as quick as he does that, he drains the life out of his body. I loose my son for hours each time.
I don't see a lot of sleep in my future
that's exactly it. they drain the life right out. I felt that way about my daughters stop-breathing seizures. as if death took her, and then gave her back again.
ReplyDeletePrayers for you, that God would help you keep on loving your son as best you can, even though it hurts your mommy-heart to watch him suffer so.
I thought you might relate to this one... thoughts I wrote when snuggling my daughter, post-seizure.
ReplyDeletehttp://www.weakandloved.com/2009/02/to-aggie-my-nap-buddy.html
Thank you for your comments. I will check your link out for sure.
ReplyDelete