I had already signed a release form months ago...and was assured as the EEG reports were filed they would be mailed directly to me. I was cynical. Which was spot on...since you've had 4 EEGs and I had yet to receive even one report.
And the office manager could not find my signed release form. But of course...we're the idiots - not that I'm bitter mind you! I waited until I had ALL the reports in hand before leaving - although I think she was hoping I'd trust her to mail them again.
I was glued to the reports and as I read the findings I found myself more confused & less confident - in my knowledge. We (daddy & me) thought that you had A focus. But the reports indicated several possible foci. Somehow the thought of foci as opposed to focus hit me like a ton of bricks! We were under the impression that the epileptiform activity was only while you were sleeping. The report states "The amount of activity is increased when the child is asleep but is still evident during wakefulness".
I've been online today in an attempt to get a better understanding of what this might mean - because it has become increasingly clear that it is essential that I educate myself. I thank God daily that I am a child of the Internet age - among so many other advantages that we have for you!
In my research I came across a very handy animated tutorial of seizures & diagrams of the brain. I LOVED it! I've been looking for just such a thing to help me - being the kinesthetic (yes I actually know what that word means!) learner that I am - this was perfect!
I'm including a link for any other mommies & daddies that are curious too...
http://www.epilepsy.com/node/3004?print=true
And the office manager could not find my signed release form. But of course...we're the idiots - not that I'm bitter mind you! I waited until I had ALL the reports in hand before leaving - although I think she was hoping I'd trust her to mail them again.
I was glued to the reports and as I read the findings I found myself more confused & less confident - in my knowledge. We (daddy & me) thought that you had A focus. But the reports indicated several possible foci. Somehow the thought of foci as opposed to focus hit me like a ton of bricks! We were under the impression that the epileptiform activity was only while you were sleeping. The report states "The amount of activity is increased when the child is asleep but is still evident during wakefulness".
I've been online today in an attempt to get a better understanding of what this might mean - because it has become increasingly clear that it is essential that I educate myself. I thank God daily that I am a child of the Internet age - among so many other advantages that we have for you!
In my research I came across a very handy animated tutorial of seizures & diagrams of the brain. I LOVED it! I've been looking for just such a thing to help me - being the kinesthetic (yes I actually know what that word means!) learner that I am - this was perfect!
I'm including a link for any other mommies & daddies that are curious too...
4 comments:
Love that link...can't believe I've never found it myself before. I can't believe you had such a hard time getting those reports! I called my Dr.s nurse & I had them the next day! On a funny note, I called our Dr.s nurse to report discrepancies!
It never occurred to me to call the nurse! duh! I dealt with the people in the EEG bldg. And even though she got them for me it wasn't without making me feel terrible! Like I dare make her work! Ugh!
I LOVE that link too! It really helped me "get" some stuff that I've been trying to understand.
Anyway...I'm gonna go try and relax...today exhausting!
...danielle
Yes, I saw that page on epilepsy.com a while back when Kay was first diagnosed with complex partial's. It's a good one. Thanks for reminding me about it. With all the research us SN parents do, they should offer a degree in internet research. I think I would have a masters by now with all the research I've done ;)
I posted one on G5 Family site about Tuberous Sclerosis that is similar to the epilepsy.com one about seizures. It's almost like "TSC for Dummies". It's a good one, with a wealth of info about TSC and an easy read, they break down all the jargon.
-Shanna
Here is two more sites that I refer to.
http://www-psych.nmsu.edu/~jkroger/lab/principles.html
http://www.emedicine.com/neuro/topic108.htm
Not sure if they'll come through here easily. Sorry the reports didn't read as you expected. Me, I just want another EEG to know how things are. I'm to the point I am going to look for ANOTHER neuro... our fifth!
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