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A daughter’s pain, a family’s agony

Kiera Echols’ parents pressed for answers to the mysterious madness that took over her life; now Echols wants to help others.

Bill Lackey/Bill Lackey Kiera Echols looks through a scrapbook with her husband, Mike, Wednesday. Staff photo by Bill Lackey

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Kiera Echols listens to her mother, Chellie Givens, talk about the disease that effected her daughter. Staff photo by Bill Lackey

Bill Lackey/Bill Lackey Kiera Echols listens to her mother, Chellie Givens, talk about the disease that effected her daughter. Staff photo by Bill Lackey

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Kiera Echols takes her father's hand as David Givens talks about how hard it was to see his daughter in the condition she was in. Staff photo by Bill Lackey

Bill Lackey/Bill Lackey Kiera Echols takes her father's hand as David Givens talks about how hard it was to see his daughter in the condition she was in. Staff photo by Bill Lackey

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By Bridgette Outten, Staff Writer Updated 12:52 PM Sunday, March 14, 2010

SPRINGFIELD — Chellie Givens needed to know what transformed her daughter from a healthy 22-year-old studying to be a medical technician to a broken patient who appeared to be on the brink of insanity.

“She was my perfectly healthy child with no medical problems,” Givens said recently, some of the old frustration leaking into her voice. “She had received national honors and was a member of Phi Theta Kappa (honor society) at Clark State (Community College). I needed some answers.”

There weren’t any answers immediately forthcoming.

Just more questions about what was wrong with Kiera Echols.

“We were angry at everything because we wanted some answers,” Givens said. “They were trying to tell us that she was crazy.

“And we were saying, ‘No, she’s not.’ ”

The beginning

In early November, Echols had headaches, body aches and neck stiffness that was attributed to meningitis.

“She just kept telling, ‘Mommy, I feel funny,’ ” Givens said. “She progressively got worse.”

A few days later, fever, light-headedness, double vision and blackouts followed.

Echols had gone to stay with her parents as her health deteriorated; her husband of nearly two years, Mike Echols, was away in Texas for U.S. Air Force basic training.

More delusions followed after Echols went to her parents’ home, including an hourlong episode where she repeatedly screamed that she was in labor.

By Nov. 16, Echols was admitted to a local hospital.

“Within three days, they told us she needed to be committed,” Givens said.

But Echols’ family didn’t accept the diagnosis.

They asked that Echols be referred to another doctor.

‘Where God wanted us’

Echols’ family wanted her to be treated at the Ohio State University Medical Center. But the hospital didn’t accept her insurance.

Echols ended up in the care of University of Cincinnati neurologists.

Her family says it was the best thing that could have happened to her.

UC neurological resident Dr. Chris Kobet had seen two other cases of anti-NMDA receptor encephalitis, which is what Echols was diagnosed with.

Echols’ family is grateful that she ended up with physicians at UC, who were familiar with the disorder, especially Kobet.

“That’s where God wanted us,” Givens said.

A couple of weeks before Echols had been admitted, physicians at the hospital had listened to a presentation on the recently discovered disorder by Dr. Josep Dalmau, the physician who identified it at the Hospital of the University of Pennsylvania.

The condition has been typically found in young females, characterized by psychosis, anxiety and mood symptoms that appear to be the beginning of a bipolar disorder or depression, Kobet said.

But the range of people affected by the disorder is expanding; it has been discovered in an ever-widening age range in women and in some men.

In many cases, a teratoma is present, but sometimes, a tumor is not found.

Researchers are still trying to determine what triggers the autoimmune reaction to the teratoma, a fleshy tumor that can contain teeth, hair and brain cells.

To further complicate matters, a test for the anti-NMDA receptor is not yet commercially available, Kobet said.

Echols’ samples had to be sent off to Dalmau in Pennsylvania.

It took two weeks to get the results back.

Watching, waiting

Two weeks of watching Echols slide further and further into her psychosis.

“It was hard to watch,” Givens said. “It was hard to watch her go through what she had to go through.”

If Echols experienced a vision where the room wouldn’t stop spinning or her mind couldn’t keep the goblins at bay, her eyes would grow larger and larger, well exceeding their normal size.

Her father, David Givens, would put washcloths over her eyes so she wouldn’t have to see the visions.

“I was a wreck,” David Givens said. “I was an emotional wreck. I couldn’t handle it.”

What hurt him the most was remembering his daughter the way he knew her — his golfing buddy, his pal, someone he was really close to.

“Sometimes I’d just leave the room and cry,” David Givens recalled, dissolving into sobs even now as his remembered the experience.

A similar helplessness had come over Echols’ husband, who was away from home during most of her illness. He was only able to visit twice.

“It was really hard,” Mike Echols said. “I was thousands of miles away and I couldn’t do anything to stop it.”

Echols tested positive for the anti-NMDA receptor and doctors located a teratoma on her ovaries.

Her teratoma was removed Dec. 23.

Recovery

Echols was released from the hospital on Christmas Eve.

It had been a long, hard month for her parents, who had stayed in Cincinnati with her since her hospitalization in November.

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Kiera Echols consented to have her case discussed in a YouTube video that her physician, Dr. Chris Kobet, has entered in the 2010 Neuro Film Festival sponsored by the American Academy of Neurology Foundation.

View the video on YouTube at http://www.youtube.com/neurofilmfest#p/c/B90313F0D99F14F8/52/dcd8_1CooZ8.

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