Dr. Jayne Ness examines CPODD patient Conner Sorrells
Over the years, multiple sclerosis (MS) has generally been thought of as an adult disease, so many pediatricians are not familiar with its symptoms and effects, says Jayne M. Ness, M.D., Ph.D., director of the UAB Center for Pediatric Onset Demyelinating Disease (CPODD). The lack of validated diagnostic criteria in pediatric patients can complicate the diagnosis of MS and other demyelinating diseases, such as acute disseminated encephalomyelitis (ADEM).
"We are finding that these children have more complex issues than we previously appreciated," Ness says. "In the past, we didn't say that a child had MS because we didn't want to label them, but now we can treat this disease in children with new medicines. As a result, it is important that clinicians recognize the symptoms of MS in their pediatric patients and refer them to a specialist to determine the correct diagnosis."
According to the National Multiple Sclerosis Society, an estimated 1 to 5 percent of MS patients experience their first symptoms prior to age 18. That means about 4,000 to as many as 20,000 children in the United States experience symptoms of MS or other related demylinating disorders. Trends show that the number of pediatric cases of MS is increasing, and in an effort to reverse that trend, Ness started the CPODD at Children's Hospital of Alabama with funding from the National Multiple Sclerosis Society. Today the CPODD is one of only six Pediatric Multiple Sclerosis Centers of Excellence in the country.
"Because of the funding from the National Multiple Sclerosis Society, we have been able to do more organized studies on these children," says Ness. "Our CPODD team of doctors, nurses and researchers are trying to cover as many bases as possible and we hope we have improved patient care."
Ness and her team follow these patients long term, and the CPODD team uses a multidisciplinary approach to treat each child's various needs. "Seventy percent of these young patients are depressed or anxious, so each one is offered evaluation for cognitive and psychiatric problems. The mental health aspects that affect these children are greater than those in adults," she says. "The good thing is they usually respond to treatments such as psychotherapy or antidepressant medications."
The CPODD also offers resources to the patient's entire family to help them cope with the challenges that demyelinating diseases pose to daily living, including medication monitoring, physical therapy, cognitive and educational evaluation and intervention, and psychosocial support. An annual family retreat to be held this year at Children's Harbor Lake Martin campus also offers support for families. "We take care of patients' siblings, too, because they also are affected by these diseases," says Ness. "The disease can fragment the whole family, so we try to nip that in the bud."
Ness and her team are happy to be able to help these children as they grow and to provide them a "one-stop shop" where they can work with occupational and physical therapists, a pediatric nurse practitioner, neuropsychologists, school psychologist and child psychiatrist, plus both an adult and pediatric neurologist for comprehensive care. "We will follow these kids long-term through their local neurologist and try to provide them with a good outcome. We want to do everything we can to help them cope with this lifelong illness," Ness says. "I believe that the future of MS is bright, and ultimately we hope to one day see a cure."