Jackson Stormes:A Difficult and Amazing Journey 

Living with Dravet Syndrome and all the complications

In the Press

July 2005-VNS Implant Follow Up

Posted by [email protected] on May 17, 2011 at 5:35 PM

Severely epileptic child finds some relief By Sara Cardine

News-Sentinel Staff Writer

Last updated: Saturday, Jul 02, 2005- 06:04:18 am PDT

A renegade morning breeze rustles leaves in the trees around the backyard ofa rural Lodihome. Among its invisible furls darts a young, tow-headed boy named JacksonStormes. His gaze is set on the swing set before him.

"Go push Jack," he calls to his mother, Jennie.

When she asks where, the boy points toward a single swing and says,"There."

"Mom, come on," he continues.

She asks if he can push off one time to get the swing started. He nods andsays, "Uh-huh."

Just one year ago, Jacksonwouldn't have been able to play out in the yard for very long without fallingto the ground in the grip of a seizure.

Plagued by violent seizures that began when he was only six weeks old, hisbrain has been scarred from electrical upsets that have been known to last aslong as three hours, according to his mother Jennie.

It's been an ongoing struggle, and only one of many.

For the past three years, Jennie has been at odds with Lodi Unified'sspecial-education department to find an Individualized Education Plan (IEP)that will meet Jackson'sneeds and encourage him to grow. An extensive document, the IEP outlines aspecial-education student's needs, expectation and lays out goals for thefuture.

She has files of correspondences from the district, as well as records ofcontinued evaluations, a collection that has grown to fill several boxesthroughout her house.

According to Jennie, Lodi Unified will not provide her son special programsbecause they've determined Jackson'scapabilities will never increase.

She disputes the district's claim that Jacksonhasn't made progress over the past couple of years and cannot effectivelycommunicate ideas or simple desires.

"I can't let the school district bully him out of a future," Jenniesaid. "He's so smart -- he just can't tell them how smart he is."

District officials, bound to confidentiality laws that prohibit them fromtalking about an individual student, can not discuss the Stormes case.

Jennie admits that Jackson's seizures were asevere impediment to Jackson'sability to function. But he doesn't have them anymore, thanks to a simpledevice implanted in his chest.

The vagus nerve stimulator, or VNS, attaches to the thick Vagus nerve, locatedin the neck.

Usually, this nerve regulates blood pressure in the aorta of the heart as wellas a person's ability to taste. But when stimulated by VNS, the nerve becomes aconduit of mild, regular electrical signals, which override the impulses thatcause seizures. A magnet wand provides stronger jolts when a seizure does cropup.

"I took the magnet and swiped it over him, and it just stopped the seizureinstantly," Jennie said, adding that the nurse was shocked to see such anabrupt change in Jackson'scondition. "It was neat to see that."

Now that the threat of multiple, brain-damaging seizures has been alleviated, Jackson's mind is morecapable of concocting complex plans and performing motor skills.

Hefting a full-sized wooden shovel to his chest, Jackson scoops up a pile of pale, crustedearth mixed with gravel. With a heave, he swings the shovel above his head andwatches the gravel cascade across the corrugated tin roof of a dog shed.

A smile and small shout of glee escape him as he hears the crash of stoneagainst metal. In a few seconds, he will repeat the process -- something hewill do several times until the experience is catalogued, allowing him to moveon to another task.

Jennie explains that, just like before the surgery, Jackson's hunger for sensory stimulationstill guides most of his activities. Only now that the seizures are gone do histhoughts remain intact long enough to build on one another.

This means that his plans and schemes are more effective. For example, the highlock on the gate to the pool can be overcome with the aid of a chair orskateboard and a cooler can be used to access the swinging bar on the backyardplayground.

But on the upswing, VNS gives him the peace of mind necessary for ideas andmemories to formulate. Jennie hopes this means a greater access, not only toforbidden locks and latches, but to a normal education.

That's why she and Jackson, along with her 9-year-old daughter, Sidnee, plan tomove to the East Coast, where a school district has agreed to pay for a privateschool for Jackson.

This school will incorporate sensory-based learning into a specializedcurriculum and can offer one-on-one work with an in-class aide.

"I'm not giving up hope," she said in an earlier interview. "Iwant him to get a high school diploma."

If all goes well, the Stormes may find what they seek when they move to theirnew New Jerseyhome. Their next town of residence?

A small town aptly named Hope.

Contact reporter SaraCardine at [email protected]


 

 

 

Categories: January 2005-VNS Implant with Hope


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