Saturday, January 07, 2006

Can new device help control seizures?

Kellen Bensing has had a bump bigger than a silver dollar on his chest for more than a year.
This wasn't one his parents had to worry about, though.


For 5-year-old Kellen, who lives in Hudson, seizures that began two years ago have sometimes left him with the bumps and bruises that come from injuries.

This one, however, is from what the Bensings call his ``clicker,'' a pacemakerlike generator implanted in his chest for Vagus Nerve Stimulation (VNS).

Although it's unclear exactly why VNS works, it helps control seizures by sending electrical impulses to the brain through the vagus nerve in the neck.

VNS was approved for treating depression in July but has been used for epilepsy since 1997.
It's been working for Kellen, a kindergartner at Evamere Elementary School, and one of his schoolmates, 8-year-old Thomas Rice, who also has epilepsy and uses VNS.

The device hasn't stopped the drop seizures in which Kellen will, in a split second, go from standing to lying on the floor. To protect himself from those, he always wears a helmet, and someone keeps a hand on him at all times to try to catch him.

But the device has made Kellen more alert by reducing absence seizures, in which his body will stop in its tracks and he will stare for a period of seconds.

When Kellen begins to convulse from grand mal seizures, his parents can calm his body by swiping a magnet over the generator in his chest to increase its electrical signal.

Every moment that passes without a seizure means less damage that has been causing developmental delays to Kellen's body and brain, say his parents, Kathleen and Keith.

With two students now using VNS in Kellen's Hudson school, teachers and staff there were trained this year on how to use the VNS magnet.

To date, the device, which is meant for patients for whom other treatments have failed, has been implanted in more than 32,000 people worldwide, according to manufacturer Cyberonics.
Few side effects

Margaret McBride, Kellen's neurologist at Akron Children's Hospital, has been offering VNS to child patients for five years.

She likes that the therapy tends to work better with time and that its side effects are minimal, unlike with many medications.

Because the device does not react with drugs, side effects generally are mild reactions to the stimulation, such as hoarseness of voice and coughing.

Cyberonics' local office was flooded with inquiries when VNS was approved for depression, said Josh Mazanetz, a VNS therapeutic consultant. Now, several implants for depression are planned in the Akron area, he said.

Christopher Durner, director of outpatient psychiatry services with Summa Health System, has begun considering VNS for the most serious cases of depression.

But he remains cautious.

The treatment is extremely invasive and more risky, in his eyes, than medication.

According to Cyberonics, VNS was shown in studies to reduce seizures by half for 43 percent of users after two or three years of use.

For depression, VNS was shown to help for about 30 percent of users after a year.
Because the therapy works at a relatively low rate and takes a relatively long time to work compared to drugs, Durner sees VNS as best for patients at greatest risk without the treatment -- those who might otherwise attempt suicide.

Still, it's good to have as an option, he said.

``The world's a better place... for those people who we don't have any answer for,'' he said.

Slight improvement

Tom Enlow, director of Akron Children's Hospital's epilepsy center, said he's been happy to see VNS working for most of his patients.

The Bensings say they are pleased with their son's results, too, but they would like to see more improvement.

Kellen's seizures have remained unpredictable.

``One day we can wake up and he can't walk or talk, and one day he may have no seizures at all,'' Kathleen Bensing said.

The Bensings also had expected Kellen's drop seizures to have stopped by now, as they often do with time and treatment for other patients.

Soon, his parents plan to turn to a ketogenic diet for him, which is high in fat and low in carbohydrates and protein. This has been shown to help with epilepsy.

When people ask Kathleen Bensing what she would do if the device were to stop working, she says they might then turn it off, but it would have been worth the try.

``For us, we had to try it,'' she said.

And besides, she jokes, if VNS stops working for Kellen's epilepsy, they still could switch it back on when he becomes a surly teenager -- to control his moods.

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