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MS used to be dubbed the “prime of life” disease because doctors thought it only struck in early adulthood.
Wrong. The National MS Society is on a mission to inform the medical and educational communities that MS and related conditions are rare but very real inchildren and teens, and to make superior care available to them.
According to the Society, there are around 8,000 – 10,000 children and teens with MS in the United States, and an additional 10,000 – 15,000 with related disorders who may go on to receive an MS diagnosis. (No one knows for sure because no definitive MS survey exists, for pediatric or adult patients. There are an estimated 400,000 Americans with MS in total.)
Expanding a model pioneered at theNational Pediatric MS Center in Stony Brook, N.Y., the Society has committed $13.5 million as part of itsPromise: 2010 campaignto establish a nationwide network of six multidisciplinaryPediatric MS Centers of Excellence. (The other five are in Birmingham, Ala.; Boston, Mass.; Buffalo, N.Y.; Rochester, Minn.; and San Francisco, Calif.)
In so doing, the Society is making great strides in improving diagnosis and care for children with MS and other central nervous system demyelinating disorders from coast to coast. A family may travel hundreds of miles to visit one of the centers. Once there, however, virtually all their medical and psycho-social needs can be addressed under one roof. All sites offer neurology, ophthalmology, neuropsychology and social work.
All children are assessed for help they may need succeeding in school as well. Financial support is available so if a family can’t pay, a center will offer assistance — even for travel and lodging.
“We do a battery of neuropsychology tests and our neuropsychologists follow up with schools and make recommendations and do a lot of advocacy,” said Marianne Doyle, MSW, the social worker with the San Francisco center, which sees patients from as far as Hawaii, Alaska and the Rockies.
“Those kinds of services aren’t normally covered by insurance. They’re exceptionally expensive, and they’re not normally part of care; you have to seek them out.”
Practitioners at the centers say the multidisciplinary approach has caused them to work more collaboratively and productively — with their patients benefiting.
Before the centers launched, it could be more challenging for physicians to communicate the implications of MS to the school and community, said Joe Ackerson, PhD, the neuropsychologist at the Birmingham center.
“I had a case where a child was experiencing difficulties with concentration, memory and fatigue related to her medical condition. But because in between episodes she looked relatively normal and didn’t have any physical signs that were obvious to the casual observer, she was viewed as lazy. So we had to educate the school that, no, it’s not that the child has gotten lazy or is no longer motivated to achieve in school, but there is this underlying condition that looks like laziness because it makes it harder to do the things kids normally do in school,” Ackerson said.
“It really is a team,” added Ann Yeh, MD, pediatric neurologist and co-director of the Buffalo center. “The decisions are always ours as a group. It’s never five different people telling the family five different things.”
The existence of a network of centers with common goals and methods means patients, too, are forging relationships nationwide, said Maria Milazzo, pediatric nurse practitioner at Stony Brook.
“Families no longer feel so alone and report that they are better able to handle what the future may bring,” she said.
As of this writing, the Pediatric MS Centers of Excellence had seen 600 patients — a great achievement for a new health care delivery model. Now, “we want families, pediatricians and pediatric neurologists to know that, if they have a child experiencing confusing neurological symptoms, or if they suspect MS, the network of pediatric MS centers can provide valuable expertise and resources to support families,” said Deborah P. Hertz, MPH, who directs the Centers of Excellence program for the Society.
“The Society has created a unique opportunity and we want families to benefit from the comprehensive services now available.”
Stony Brook University Hospital
101 Nicolls Road Stony Brook, NY 11794