Help That Spans the Globe
By George Stinnett
As Christopher’s parents, Maria José and Jamie Camp, stepped off the plane, they breathed a huge sigh of relief.
Their trip started at a university hospital in Cadiz, in the south of Spain, near where the Camp family lives part of each year to be near Maria José’s family. But their ordeal started several weeks earlier, when Chris became sick and rapidly lost control of his lower body.
A series of chronic throat infections over the winter and a week out of school had left the active, athletic second-grader weak. After returning to school, Chris complained of pain in his legs. A trip to an emergency room near their home in El Puerto de Santa Maria yielded a diagnosis of “growing pains.” But later that evening, Chris’s pain had worsened and his legs were wobbly. After a round of testing in the same ER with no definitive results, Chris was transferred to the teaching hospital at the University of Cadiz.
After several more days of testing and treatment for what his doctors thought was meningitis, Chris’s condition worsened. He lost control of his bowel and bladder and his legs became paralyzed. His doctors were at a loss to explain what was wrong.
Maria José’s instincts told her it was time to consult CHKD near their home in Virginia Beach, where they live for part of the year. Chris’s older brother had once been cared for there, and they were familiar with the hospital’s reputation.
Jamie called CHKD, and soon after pediatric neurologist Svinder Toor was on the phone with the frantic parents.
It was not the first time he had heard of such symptoms.
“Dr. Toor was incredible,” Jamie said. “Not only did he call me right back, he patiently listened to all we were telling him. Then he walked me through some simple tests to perform at Chris’s bedside, the results of which I described as he listened in Norfolk. Right away, he seemed to know what the problem was, and he was very reassuring.”
Jamie and Maria José wanted to leave for the States right then. But Dr. Toor advised otherwise. He wanted to confirm his suspicions and ensure Chris could safely withstand the trip.
A neurologist at the hospital in Cadiz was willing to consult with Dr. Toor and follow his lead. An MRI was ordered, and as the neurologist in Spain described the MRI results to Dr. Toor, it all became clear.
Chris had contracted acute disseminated encephalomyelitis, a normally brief but intense inflammation in the brain and spinal cord that damages myelin, the protective covering of nerve fibers. It often follows a viral infection, in this case perhaps originating with Chris’s earlier throat problems, and it comes on very quickly. It can cause weakness to the point of paralysis as well as difficulty coordinating muscle movements. And it occurs almost exclusively in children.
“If you don’t have experience in diagnosing and treating children, it can be hard to pinpoint,” Dr. Toor said. “It’s easy to confuse the symptoms with those associated with other diseases like multiple sclerosis or meningitis.”
Dr. Toor recommended a five-day course of intravenous corticosteroids to reduce inflammation in the brain. With his course of treatment on track, things started to turn around for Chris over the next two weeks.
“We spoke by phone with Dr. Toor several times a day,” Jamie said. “He called often to check on Chris. And he gave us his office, cell and home phone numbers in case we ever needed him between calls. It was more than we ever expected.”
When Chris was stable enough to fly, Dr. Toor briefed the medical team from Canada who would accompany the flight.
Though the Camps arrived at CHKD late at night, they discovered everything was ready.
“It was incredible,” Maria José said. “The nurses and doctors knew we were coming and what Chris’s condition was. They were especially attentive to Chris and to us. Immediately, Chris was comfortable with his surroundings.”
Early the next morning, Dr. Toor evaluated Chris’s progress and determined the need for an inpatient stay in CHKD’s rehab unit for physical and occupational therapy.
“We see several children a year with Chris’s illness,” said Dr. Jean Shelton, director of CHKD’s rehabilitative medicine program. “Helping them quickly gain strength, balance and walking ability is important. Their nursing care also is important to prevent secondary complications like pressure sores and skin issues.”
The Camps were told to expect four to six weeks in the rehab unit, a normal period of intense therapy in a case like this. But Chris had other ideas. It was getting close to summer, and he wanted to get on to the soccer, basketball and swimming he loves.
“He was really motivated,” said Tracye Barrett, his inpatient physical therapist. “He worked very hard for us. Plus his family worked with him on exercises we gave them.”
Physical therapy is tough work, especially when a child is extremely unsteady and weak. The therapist’s goal is to make that hard work as fun as possible.
“We use lots of equipment like adaptive bikes and scooter boards and other activities the child’s interested in – soccer in Chris’s case – to make it seem more like play,” Barrett said. “And we set each day’s goals in functional terms, like walking to the gym unaided, rather than numbers of repetitions, as you might for an adult.”
As Chris worked, his parents marveled at what they were experiencing themselves. “Everyone was always smiling and had nice words for me,” Maria José recalled. “It seemed like home.”
Jamie realized it was the way other children were treated as well. “CHKD is an extraordinary place. And I ran across so many great families while there,” he said. “They have such an incredible way of dealing with parents as well as the children.”
Chris was ready to go home a week later to continue his therapy on an outpatient basis.
Chris’s thrice weekly schedule at CHKD’s Virginia Beach therapy center eventually dwindled down to once a week. Barrett also suggested sand soccer – a great at-home workout for a soccer player who loves the beach.
In late July, he made his final visits to Dr. Toor and Dr. Shelton.
“He’s doing great,” Dr. Shelton said.
Dr. Toor agreed. “Chris’s final MRI showed the neurological healing was complete; physically he’s totally normal,” Dr. Toor said. “He had a tremendous amount of disease in his brain and spine, but he had a wonderful outcome.”
A wonderful outcome indeed say the Camps. “I can’t adequately describe Dr. Toor’s importance to us,” Maria José said. “He saved my baby’s life. An angel of mercy came to help us find Dr. Toor.”
“And CHKD,” Jamie added.
“Until you’ve gone through such a frightening experience with your child, you might never know what an important resource CHKD is,” Jamie said. “Everyone gets treated the same. And patients aren’t treated like they’re just small adults. We couldn’t imagine having our own children anywhere else – even if we have to cross the ocean to get them there.”
Dr. Toor practices with Children’s Specialty Group PLLC at CHKD. Dr. Shelton practices with the EVMS department of rehabilitative medicine at CHKD.
This story was featured in the fourth quarter 2006 issue of KidStuff, a publication of Children's Hospital of The King's Daughters.