Joshua’s mom just knew something was not right.
When her 10-year-old developed a fever, Carol went back and forth with the doctors – visits, phone calls, urgent care. It was routine, doctors told her and her husband, Jim.
But Carol had nursed their three children through a lot of routine childhood illnesses and this time, she was so worried about Josh’s feverish condition, she spent the night on his bedroom floor. She was only inches away when he woke up writhing in pain and screaming, “My head, my head, my head!”
He was rushed from their Rancho Penasquitos home to Rady Children’s, where the medical team quickly stabilized him. But within two days it was clear something was still not right. His jaw was clenching, his eyes losing focus, and the night nurse didn’t like the way the boy, a star soccer and baseball player, was having trouble walking.
Soon Carol and Jim stood where no parent wants to be – in a hospital hallway, watching a critical-care team wheel their youngest child, their baby, away from them.
“It was the scariest thing we had ever seen,” Carol recalls. “We thought he was going to die.”
Now the family talks about May 2006 when Josh went to sleep and almost didn’t wake up.
“I don’t remember anything. Except some pretty weird dreams,” says Josh. Teenage Mutant Ninja Turtles haunted him. “I dreamt that my parents were connected to me by wires and I could pull on the wires for medicine.”
What was killing Josh was unclear. The first doctor diagnosed strep throat, the next said pneumonia. Rady Children’s physicians suspected virus but what kind? Meningitis? Encephilitis?
Josh arrived in the Ernest Hahn Pediatric Intensive Care Unit (PICU) in grave condition, and the first MRI didn’t look good, recalls Dr. Sandeep Khanna, “Everybody had apprehensions that this could have devastating results. But I always tell the family that there is hope.”
In the four years since Dr. Khanna joined Dr. Brad Peterson, the pioneering head of the PICU known for his innovative and aggressive care, he’d seen similar virus cases that did have devastating results. Khanna remembers them, the way he remembers Josh, the one who walked away unscathed.
Rady Children’s Neurology and Infectious Diseases teams diagnosed ADEM, Acute Disseminated Encephalomyelitis, a condition that damages the protective covering (myelin sheath) of the spinal cord and brain’s nerves.
“It’s a pretty tricky diagnosis,” says Dr. John Bradley, director of Rady Children’s Infectious Disease Division. “Their brain is inflamed, but there are dozens of viruses that can inflame the brain, and not all of them leave fingerprints.”
ADEM is a stealth disease, occurring post-infection as the body reacts to the brain tissue it thinks is still harboring virus, says Bradley. So it tricks the body into doing battle against itself, injuring brain tissue. But doctors have a great weapon against ADEM – MRI technology that allows them to spot the enemy in the disease’s patterns.
While ADEM rates are hard to pinpoint, researchers estimate it strikes an estimated 20 out of 100,000 people — mostly children. For children unprotected by vaccination, the rate runs 10-times higher. It can kill, with a mortality rate as high as 20 percent. And it carries potentially serious complications, including mental retardation and multiple sclerosis.
Josh spent nine days in a coma in the PICU with his family constantly by his side, Carol and Jim along with Jocelyn and Jake, his big sister and brother. They coated the walls with get-well wishes from friends, family, classmates, Josh’s Little League and soccer teams. They marveled at how many machines he was hooked up to, and how the brain waves they could see on the machinery would almost jump for joy when the family played both reggae and classic country by Johnny Cash.
Then, on the 10th day, a jubilant Jocelyn recorded in her Internet blog, “Josh is starting to wake up more and more. It’s amazing to literally see my brother come back to life…”
Nurse Practitioner Linda Fisher remembers Josh as “one of my kids.” That’s the way Dr. Peterson trained her, as he trains all his staff and medical students, to “adopt” every child they treat and to pay attention to every tiny detail. That’s a lot of emotional adoption, considering the PICU treats some 1,200 patients per year, but they get results: The PICU survival rate ranks among the nation’s highest, as measured by Pediatric Risk of Mortality data.
When Fisher eased Josh off his breathing tube, he spoke his first words in weeks: I love you, Mom.
Facing death together changed so much for them. Carol still runs a talent agency, but now she’s even more determined to take nothing in their life for granted. She volunteers for San Diego Hospice. Jim left his computer programmer job to try real-estate development.
Jocelyn attacked her studies at University of California-Santa Cruz with renewed energy, wanting to really make a difference in the world. Jake joined her studying at UC-Santa Cruz. The two teens really matured as they ran the home-front in between attending high school and visiting Josh. Jocelyn recalls one night they saw literally a line of people bearing home-cooked dinners, get-well cards and all manner of sustenance to their door. The sight proving the basic goodness in people was one they would never forget. In that moment, she believes, she saw Jake grow up, she said, “It was like a cloud just blew away.”
As for Josh, skateboarding and playing drums are what’s cool. Although he has no physical damage from his illness, he believes it left him with heightened senses. His eyesight seems shaper, his sense of smell stronger, he says. “Everything tastes better now.”
Originally published in Kids’ NewsDay, San Diego Union-Tribune,
October 7, 2008.