April 23, 2010

>> Friday, April 23, 2010

2 events. 10 seconds each..one at 11:45 last night and one at 7:30am this morning.

He missed his morning medication yesterday because I was at the University of Utah taking an Insider Tour. IT WAS GREAT...and it was sobering.

It appears that the glossy-eyed looks I get from Doctors are mostly after I tell them Generalized Seizures. Because with Generalized Seizures the electrical activity happens all at once, from all over the brain. If it was a Focal Seizure then he would be a surgery candidate, but because his little brain misfires either all at once, or from a specific location yet to be determined, they shrug and shut down. No kidding. Not all do that, but the ones that will see Bug do.

I don't get it. I just don't. He has had over 1500 seizures in 4 years. 1500. What more does it take?


Holly April 23, 2010 at 11:57 PM  

When Matthew went to PCMC for his heart surgery, the boy in the bed next to him in ICU had brain surgery in an effort to stop/slow down his seizures. I wish we had contact info for them to see how things worked out for them.

UofU situation... I think they're CHICKEN!!! WTH?? 1500 is NOT acceptable!!! So you have to find a DOC with some JUEVOS!! Thanks for keeping us posted and I'll keep you in my prayers! (((HUGS)))

Nett April 24, 2010 at 12:25 PM  

LOL, Holly I think it is my approach..as if that should affect anything BUT...

Bug's Neuro is VERY well thought of and Doctors will talk to me and be very interested UNTIL I tell them who his Doc is..then they change. Dr. Funke told me that Doctor are Professionals and Professionals do NOT get upset when you get a second opinion. He said: Go see a different Doctor...NOT at PCMC.

I love the other departments there..I mean LOVE but Glenn and I are NOT satisfied with the level of service we are getting with Neurology and NO ONE there cares that we are unhappy. Tragic.

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What a Seizure looks like (Graphic Content Included)


Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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