I am not an advocate of radical brain surgery as a first option in controlling epilepsy. That would be nuts.
Let me be clear.
I did not ever in a million years want to see my two year old son like this...
If you thought so...you would be nuts!
But what I am advocating...is that parents of children with refractory seizures. Meaning seizures that do not respond to medication. Seizures that slowly steal children. Their joy. And energy. And ability to simply live. Uncontrollable saturating seizures that demoralize families. Infantile Spasm seizures for instance.
Those parents should have access to every weapon available to help rescue their children.
Sadly those children...my child...are written off by the majority of the neurology community.
That is why so many IS families make the long emotional trek to Detroit. To see Dr. Rockstar. Who was brave enough to explore the possibility that some of these kids could be rescued. And so parents were armed with a new weapon to wage war against the Monster. The PET Scan.
I'm very fond of The PET Scan. Trevor's case was complicated. There was no specific focus. No lesion that could be seen with magentic forces. There were only seizures. Hundreds and hundreds of uncontrollable seizures. And Hypsarrhythmia saturated EEGs. And neurologists, like Dr. Boston, who had written him off.
But the PET scan? That was different. The PET offered us hope. For it revealed Trevor...albeit after much discussion...was indeed a surgical candidate.
My local hospital leans towards conservative interventions. Or as Jonathan likes to say...they're pill pushers. Which explains how it is a Little Rhody boy wound up in the surgical suite of Children's of Michigan.
But what about those families who have tried the pills? Have cocktailed the pills? Exhausted the pills?
But not the tests. Take the MEG for example. Which according to GMA...
"Magnetoencophalography, or MEG, is an imaging technique used by doctors to detect changes in the brain. But unlike other imaging tests, the MEG scanner tracks changes in the brain instantaneously...
The MEG scanner can detect changes in brain waves that occur on the order of milliseconds, as opposed to a second or more with magnetic resonance imaging (MRI). And for a select few patients like Amanda, those extra milliseconds can mean the difference between life and death.
Other less costly imaging techniques, such as magnetic resonance imaging (MRI) or electroencephalography (EEG) are more conventional, but the MEG scanner, some say, offers a novel approach that can help determine whether surgery is necessary in some patients.
"MRI only shows physical structure, but does not tell about the function of the brain tissue," said Dr. James Grisola, chief of neurology at Scripps-Mercy Hospital in San Diego, Calif. "MEG shows brain function, whether a particular brain area has too much electrical activity, which is why it is important for finding areas that cause seizures."
The MEG scans showed that Amanda's seizures originated in an unusually deep fold in the brain that looked normal on previous brain scans.
"[MEG] identified a target which was right in front of her motor areas, which we could potentially go back and take out," Raghavan said.Since her surgery in March 2009, Amanda has not experienced a single seizure"
read the entire article here.
What do you say to those parents?
Let me assure you...and the chief of pedi neurology who once asked me...I was not ready to chop out half of my son's brain. Trust me when I tell you...he is nuts.
But when you're holding a child. A seizure saturated child. And you have exhausted the medications available. And other tools. And your heart longs to exhaust every avenue. Because without doing so how can there be closure?
I was that parent. I am not naive. I know that just as various pills will not be the magic med for each child. Neither will surgical intervention. But I passionately believe it is a reasonable next step to allow parents (who so desire...because not all do) to explore surgical intervention in the fullest manner science offers today.
But maybe I'm nuts.