When Dr. Edward Kolb stepped into his new role as director of Boys Town National Research Hospital, it was obvious to him one area where the hospital could make a difference.
For some time, Nebraska families have faced months-long waits — and in some cases, travel — to see in-demand specialists for their children with neurological conditions, including epilepsy.
To help address the shortage and fill gaps in care, Boys Town National Research Hospital is launching a pediatric neuroscience initiative.
“It’s just a numbers game,” Kolb said. “We’ve got more kids than our child neurologists can support.”
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Boys Town already has signed two new pediatric neurologists, one specially trained in pediatric epilepsy, and its first pediatric neurosurgeon. All three are scheduled to arrive this summer.
Leading efforts to build the program will be Dr. Deepak Madhavan, who joined Boys Town late last month as executive medical director of pediatric neuroscience.
Madhavan said the area has a hard-working core of neurologists, but they’re overwhelmed because there are so few specifically for children. He initially set out to practice adult neurology in Omaha but was asked by families and other physicians to begin seeing kids as well, as do other neurologists at Nebraska Medicine, where he previously was employed.
Kolb, who became director of the hospital in November, said he’d heard for some time — both as a clinician and as a parent of a child with epilepsy — about families having to leave the area to get care for kids with certain neurological conditions.
Kolb said the numbers backed that up.
Nebraska has five board-certified child neurologists available to serve its 476,000 children, according to data from the American Board of Psychiatry and Neurology. That’s one for every 95,000 kids.
Surrounding states have lower ratios, ranging from one for every 27,000 kids in Colorado to one for every 73,000 children in Iowa. In Minnesota, it’s one for every 20,000 kids. To get to that level, Kolb calculated, Nebraska would need 19 pediatric neurologists.
Nebraska also has an estimated 2,800 children with epilepsy. The nearest comprehensive epilepsy centers that specialize in treating them are in Kansas City, Denver, St. Louis, Minneapolis and Iowa City.
Kolb said Boys Town had been talking with other organizations in Omaha for the past several years about building pediatric neurology together.
But he said he realized in November that not only had they not built a program, the community had lost two pediatric neurologists to retirement and two others had left the area.
Said Madhavan, “What we hope to do is use our resources, our visions and our energy to try to enhance the access, the availability and the breadth of services that are available to these children.”
The initiative will be based at the hospital’s west Omaha location on the Boys Town campus.
“We’re going to recruit good people and build around them and make sure they have every resource that they need to treat children to the height of their abilities,” Madhavan said.
The hospital, for instance, plans to update its long-term monitoring unit, which allows experts to look for signs of epilepsy over days or more. The hospital’s newly signed pediatric epilepsy specialist will offer that service.
With any neurological disorder, Madhavan said, early detection and treatment stand to help a child do better over the long term. That also could save health care dollars down the line.
Kolb said the hospital will continue to look for opportunities to work with other area institutions.
Boys Town already has a good relationship with the Munroe-Meyer Institute at the University of Nebraska Medical Center, for instance, which focuses on genetics and autism. Some 40 percent of children with autism have seizures.
“As we grow it, there certainly is no reason why there wouldn’t be more community collaboration,” he said.
Kolb said the hospital has not put a price tag on the initiative.
“We’re a well-resourced organization with a big heart,” he said. “We certainly have the resources to do this.”
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