Sixteen-year-old Brandon Hansen suffers from a recently discovered and relatively rare disease called eosinophilic esophogitis, or EE, which causes a proliferation of the white blood cells called eosinophils to inflame the esophagus.

What that means is that someone suffering from EE is often in pain: the esophagus swells as the white blood cells mount an allergic reaction and infection. The result is a difficulty swallowing solid food and a pain that can keep a person from sleeping or concentrating. Adults with the disease sometimes say they feel like they are having a heart attack. Often associated with acid reflux, doctors typically prescribe batteries of allergy tests, dietary changes and acid reducing medications.

But none of these treatments appeared to help Brandon who has now been using an experimental theory called neurofeedback. The treatment uses electromagnetic waves to influence and record the activity in the brain, where EE causes white blood cells to respond to a location where they are not needed. The hope is to change Brandon’s brainwaves and cut off the reaction that spurs the eosinophils.

While undergoing the therapy, he can’t watch scary or action-packed movies (Brandon and every teenage boy’s favorite kind). Still, neurofeedback is the first treatment that has shown any real promise, the Hansen family says. Over the summer Brandon worked out to get into football shape. But Brandon’s EE flared up again about the time Bitterroot fires began to pour exacerbating smoke into his home valley. He tried to struggle through the pain, but by the middle of October he was out of school again. Gone too was an opportunity to work as an assistant at the Rocky Mountain Laboratories.

Brandon is now undergoing another round of neurofeedback - although, because the sessions are considered experimental, the family’s health insurance doesn’t cover them so they do not know how many Brandon will be able to have.

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First published in December 2009

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