Friday, October 4, 2013

Stanford scientists turn seizures into music


Amazing and heart breaking to listen to






( From Huffingtonpost.com)


Maybe you know what a seizure looks like, but ever wonder what one sounds like? To create the strange music in the recording above, Stanford University neurologist Dr. Josef Parvizi and his colleague Dr. Chris Chafe used electrodes to record the brain waves of an individual in the throes of a seizure. Then they converted the spikes of rapidly firing brain cells into tones that mimic the human voice.
"My initial interest was an artistic one at heart, but, surprisingly, we could instantlydifferentiate seizure activity from non-seizure states with just our ears," Chafe, a professor of music research at the university, said in a written statement. "It was like turning a radio dial from a static-filled station to a clear one."
The researchers say their "brain stethoscope" could lead to the development of a biofeedback device that would make it possible for caregivers to detect seizures in people with epilepsy simply by listening to their brain wave activity.
"Someone -– perhaps a mother caring for a child -- who hasn't received training in interpreting visual EEGs [electroencephalograms] can hear the seizure rhythms and easily appreciate that there is a pathological brain phenomenon taking place," Parvizi,associate professor of neurology at the university, said in the statement.

Monday, September 30, 2013

Camp Candlelight Pictures

 Almost four months later and I am finally posting pictures from camp


Arthur had a blast. These are pictures Arthur took and a couple from the foundation

The lake. Yes, they got to go swimming and canoeing

 The bunks in their cabins

 The cubby above Arthur's bed

 Looks like lunch in the mess hall

 Archery

 Horseback riding

 Goofing around




 The pink group!
 Arthur got some great sunset pics!



It was a great experience for him and we are so glad he went
visit the Arizona Epilepsy Foundation Facebook page
for more info and pictures!

Wednesday, June 12, 2013

Camp Candlelight

This past Sunday we dropped Arthur off at Camp Candlelight.
The camp is run by the Arizona Epilepsy Foundation.

It is located up in the mountains, about halfway to Flagstaff.
Very beautiful and remote.

The camp is staffed with Nurses and Doctors. Many who
specialize in Neurology and epilepsy.
Plus, many volunteers from the Foundation.

I have to admit it was hard to send him.
He will be gone for an entire week
It helps that he has been seizure free for over a year.
But still......
A parent of an epileptic lives with one eye always watching
and one ear always listening

So to not be on constant alert, is weird.

My husband and I both knew that camp would be so good for him.
To break away from us,
to be with other children just like him.
To just get to go to a sleep away camp!

They get to sleep in air conditioned cabins.
The counselor to camper ration is almost 2:1
They get to go rock climbing, canoeing, swimming, archery practice,
 horse back riding. Just to name a few

How many parents would be terrified to let their epileptic do that stuff???

These kids are amazing and deserve this.

I hope you are having a blast buddy! I miss you more than words can say
xoxo

Thursday, June 6, 2013

He finally slept!!!

Arthur had to have another
sleep deprived EEG.
He had been complaining of  the "funny feeling."
We tried playing with his meds but it never
seemed to go away completely.
He has so many of those listed, I'm not sure
if it's all seizure related or not.

So off to PCH we went.
It really is a beautiful hospital, inside and out.
This was our first time here since we
moved to Arizona.

In the past Arthur never seemed to be able to fall asleep during the EEG.
No matter how little sleep he got.
We finally went to a hospital that used their brains!! (no pun intended)
The room had no windows and was nice and dark.
At previous facilities there was always a window with light peaking through the
blinds. No exactly the best when trying to get a kid to sleep during the day.

This time, they made him comfortable and the lights went out.
I had a hard time staying awake! But....
He SLEPT.

Which is the whole point of a sleep deprived EEG.
Something about lack of sleep excites the brain of an epileptic.
They said it would be 3-5 days before the 
neurologist got the results from the tech.


My hats off to the people of Phoenix Children's.
They had an area just for sleep deprived EEG's.
With signs warning people it was a quiet zone.  I was very impressed.








Saturday, May 11, 2013

We are in this fight together


Found this picture on Instagram.
I think it's a beautiful representation of the fight against epilepsy.




Did I mention tomorrow will be Arthur's 1year anniversary of NO seizures!!!
Still no EEG telling us otherwise,
so were taking the day!

Woo Hoo!!


A big Happy Mother's Day to every Mama out there!!!