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Setting the standard for childhood MS care
Dr. E. Ann Yeh
E. Ann Yeh, MD, director of the Pediatric MS Center of the Jacobs Neurological Institute and assistant professor of neurology at the University of Buffalo
Dr. Bianca Weinstock-Guttman
Bianca Weinstock-Guttman, MD, director of the Pediatric MS Center of the Jacobs Neurological Institute and a neurology professor at the University of Buffalo.
The late Buffalo neurologist Lawrence Jacobs, MD, devoted his career to improving the lives of adults with multiple sclerosis. From his pioneering research he developed the interferon drug Avonex, the most prescribed treatment for individuals with relapsing MS.
Today, specialists at Women & Children’s Hospital of Buffalo are building on Jacobs’ legacy with an eye to the youngest MS patients. At the Pediatric MS Center of the Jacobs Neurological Institute – one of six sites that the National Multiple Sclerosis Society has designated a Center of Excellence – they are setting the standard for childhood MS care while untangling the disease’s lingering mysteries.
The Center was established in 2006 with a $1.8 million grant from the National MS Society. Collectively, the six facilities have built a registry of patients that is yielding important clues into the pathogenesis, demographics and natural history of at disorder that, until recently, was thought to occur only in adults.
“What really revolutionized the recognition of multiple sclerosis in children was magnetic resonance imaging,” explains E. Ann Yeh, MD, assistant professor of neurology at the University at Buffalo (UB), who directs the center with Bianca Weinstock-Guttman, MD, also a UB neurology professor. “As MRI technology has been more readily available, we have been able to make the diagnosis earlier.”
Yeh, Weinstock-Guttman and their colleagues are now using the same technology to distinguish pediatric MS from the adult-onset disease. In 2009, they reported in the journal Brain that children with MS had more brain lesions than their adult counterparts. Measuring two types of brain tissue damage, they found that the overall disease burden was greater in children in the early stages despite the fact that children develop disabilities at a slower pace than adults.
“What we now understand is that while children may look very good on the outside, their brain is affected from the beginning. They will progressively experience loss of reserves,” says Weinstock-Guttman.
“They may recover very fast from their initial episodes, so they appear to be doing very well superficially,” she adds. “However, because of these brain lesions, progressive deterioration may occur in the long run, after the reserves are depleted. Therefore, we know we have to follow pediatric patients very closely and provide effective preventive therapies.”
In addition to Weinstock-Guttman and Yeh, the Pediatric MS Center staff includes a case manager, a pediatric neuropsychologist and pediatric physical, occupational and speech therapists. Physicians in pediatric urology, otolaryngology, psychiatry and neuro-ophthalmology provide care on a case-by-case basis.
“I don’t think that families realize before they come here that they’ll receive this many services,” Yeh says. “Those who self-refer to us are worried, and they’re trying to understand more about multiple sclerosis. When they come here, they have the pleasant surprise of seeing all areas of their child’s illness addressed.”
Pediatric-onset MS comprises up to 5 percent of the 400,000 total cases of multiple sclerosis in the U.S. Extremely rare in children younger than 10, the disorder usually emerges during the stormy years of adolescence.
“Being a teenager without a chronic disease is difficult enough, so many of our patients struggle a great deal,” says Weinstock-Guttman. “A few are very optimistic and go through without problems, but others become depressed, complaining of sleeping problems and headaches. It is a challenging time, so we are there to hold their hands, to counsel them and to encourage healthy habits.”
That includes discouraging smoking, a potential risk factor in the development and progression of MS. Another concern among teen-age patients: medication compliance. The center recently produced a DVD for the National MS Society in which youngsters share their experiences with the injectable drugs.
Because MS can compromise a child’s ability to think, reason and remember, school can be especially trying. The center’s social worker, Mary Karpinski, who co-wrote a handbook about pediatric MS for school personnel, serves as a liaison between families and schools, advocating for educational accommodations based on the child’s neuropsychology assessment.
“Schools may not be aware that kids are suffering cognitively because their gross motor skills are intact,” Yeh points out. “Motor disability progresses at a much slower rate in kids with MS than in adults, so what their teachers see is a student who, from outward appearances, looks fine.”
When symptoms do present themselves, teachers don’t usually recognize them as such. Lassitude due to impaired nerve conduction may be mislabeled laziness. Illegible handwriting may be attributed to sloppiness when it, in fact, could be a byproduct of optic neuritis, often the heralding manifestation of MS.
“If kids have been significantly affected by optic neuritis they can’t see the lines on notebook paper very well,” Yeh says. “As a result, their handwriting may be difficult to read because they don’t know where to place the words. It’s these kinds of things that we help the schools recognize.”
While many of the center’s patients hail from Buffalo – which has the second-highest rate of MS in the country – children travel from all over the country, and beyond, for treatment. More than 200 pediatric patients receive MS care at Women & Children’s Hospital of Buffalo, about half of whom have multiple sclerosis or another demyelinating disorder, such as acute disseminated encephalomyelitis, transverse myelitis and Devic’s disease.
“The majority of our base is from Ohio, Pennsylvania and New York, but we have seen patients from all over the world, including England and Kuwait,” Yeh says. “If they experience exacerbations, local patients will come see us in person, but we usually manage those who are farther away via telephone with their doctors. We prefer it if out-of-town patients can make it here for routine visits twice a year, but because of the time commitment, some families can only make it once a year.”
When pediatric patients turn 18, they transfer to the William C. Baird MS Center, also part of the Jacobs Neurological Institute. “Our established adult center was critical to us getting the grant for the Pediatric MS Center,” says Weinstock-Guttman, who also directs the Baird Center. “One of the considerations that our pediatric center was built on was that there would be neurologists here with a specialty in adult MS responsible to take over their care.”
Just as patients benefit from this seamless care continuum, it’s proving advantageous to researchers. Until recently, much of the data about pediatric MS was drawn from adults reporting symptoms they experienced in childhood.
“Everything that we’ve seen to this point has been retrospective data,” Weinstock-Guttman says. “Although you trust a 40-year-old patient when she tells you that she had her first symptoms at 15, from a research standpoint the data is much stronger when you can follow patients from the get-go.”
Doing so, researchers anticipate, will produce far-reaching findings about the disease, in children and adults.
“Kids have had fewer environmental exposures at the time of their disease, so they can teach us about the environmental causes of MS and its progression,” Weinstock-Guttman says. “We’re turning to this special group of patients, who have started with us so early, to help us find the answers we seek.”