Running Down GBS, Arden Riley

This family photograph of Arden Riley, with her parents Michael and Jocelyn Riley, was taken shortly before the infant contracted Guillain-Barre syndrome this past spring. Arden is perhaps the youngest person to to be diagnosed with the paralyzing condition.

Arden Riley was a typical 7-month old, scooting, babbling, laughing, zooming around in her baby walker and getting into everything within her reach.

Then on May 3, when her mother Jocelyn Riley went to get her out of her crib, Arden just stared at her.

She didn’t cry.

She didn’t smile.

She didn’t reach out for her mommy.

“Her eyes were moving and that was it,” Riley recalled. “She could not hold her head up. … She was totally paralyzed.”

Riley and her husband, Michael, rushed their baby to the hospital in their hometown of Harlan, Iowa. Blood tests found nothing amiss. The Rileys were sent straight to Omaha’s Children’s Hospital and Medical Center.

Doctors suggested three possibilities: botulism, meningitis or Guillain-Barre syndrome (GBS).

No one suspected GBS; Arden was too young, the onset was too fast and too severe.

But while hospital staff ran their tests, Riley consulted the Internet.

To her, Guillain-Barre was the only thing that made sense. Arden had just had a flu shot five days before. GBS is one of first complications listed by the Centers for Disease Control -- occurring in “fewer than one or two cases … per 1 million people vaccinated.”

And Arden was one of them.

She is one of the youngest -- and possibly the youngest -- person to ever be diagnosed with GBS in Nebraska and maybe in the United States, Riley said.

Saturday, nearly four months to the day of that devastating diagnosis, Arden and her dad will take part in the annual Running Down GBS 5k Walk/Run at Holmes Lake Park. Dad will push Arden in her stroller. Jocelyn Riley, who is eight months' pregnant with Arden’s baby brother, will cheer from the sidelines.

The event begins at 9 a.m.

Walk/run organizers have dedicated the event -- and the money raised -- to Arden and her family to help with ongoing medical expenses.

Arden, while not walking, is crawling, pulling herself up to stand and even trying to take a few steps, her mother said in a phone interview.

It has been an incredible four months.

Guillain-Barre syndrome is a neurological disorder in which the body’s immune system attacks part of the peripheral nervous system. The onset can develop over several days or weeks -- typically it begins in the feet or legs with unexplained tingling and weakness and then moves upward. As the syndrome progresses, it destroys the myelin sheath surrounding the axons of nerve cells and sometimes even the axons -- preventing the nerves from sending signals from the brain.

Eventually the patient will lose the ability to move, speak, close their eyelids, swallow and breathe.

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Although GBS is life-threatening without medical intervention, nearly full recovery is possible with intensive therapies.

With the benefit of hindsight, Riley said there were signs Arden was not quite right after she got her final immunization shot and the recommended flu shot on April 29.

She was crabby. But she also was teething and just had been poked with two needles, Riley said.

By May 2, the daycare provider noticed Arden was somewhat “lethargic and not herself." When placed in her walker, she just sat there instead of “zooming around” like normal. Yet Arden was eating, going to the bathroom and didn’t have a temperature.

Twenty-four hours later, Arden was paralyzed.

She was not only diagnosed with GBS, but with the Miller-Fisher variant of the syndrome, which paralyzes the eye muscles and prevents tendon reflexes. Miller-Fisher is extremely rare -- affecting only 1 to 5 percent of all GBS sufferers, according to the National Institutes of Health.

Arden spent two weeks at Children’s Hospital. She was placed on a feeding tube.

“Her vocal cords were paralyzed and all of her thoracic muscles," Riley said. "They put a feeding tube directly into her intestine. She came extremely close to needing a ventilator, but staff kept suctioning her constantly. They kept preparing us for it.”

The saving grace was intravenous immunoglobulin (IVIG), a blood product that helps people with antibody deficiencies.

On May 13, Arden was moved to Madonna Rehabilitation Hospital in Lincoln.

She had physical, occupational and speech therapy twice a day.

“They were moving her all the time,” Riley said.

Ever so slowly, Arden started moving on her own.

“First she was able to move her head a little," Riley said. "Then her facial expressions started to come back. She was able to raise her eyebrows and her face came … it was no longer distorted when she smiled."

Her right arm and left leg were the first limbs to move. Then she started moving her torso.

When GBS leaves, it starts at the top and moves down, Riley said.

Which is why Arden is still having some issues with her feet and ankles. High-top shoes and ongoing therapy are helping with that.

Arden was released from Madonna just before the Fourth of July. She continues to receive therapy three to four days a week back home in Harlan.

On Sept. 10, Arden will turn 1.

And what a celebration it will be, Riley said.

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Reach the writer at 402-473-7217 or eandersen@journalstar.com.

On Twitter @LJSerinandersen.


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