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KU Wichita Pediatrics forges partnerships to expand care for kids

The KU School of Medicine-Wichita’s pediatrics department has long had a clinic for children with PKU deficiency, a genetic condition that prevents the breakdown of phenylketonuria, a building block for essential proteins.

The KU School of Medicine-Wichita's pediatrics department has long had a clinic for children with PKU deficiency, a genetic condition that prevents the breakdown of phenylketonuria, a building block for essential proteins.

But the more Sid Sivamurthy, M.D., worked with his PKU patients, the more he came to believe he needed an expert partner to provide the most current and evidence-based care. So he looked to form another link with specialists from the University of Arkansas with whom the department was already working. KU Wichita Pediatrics faculty member and genetic counselor Shobana Kubendran has been offering genetic counseling in partnership with the Arkansas specialists since 2010.

It just made sense, he said, to add care of other chronic metabolic conditions available to families.

The Kansas Department of Health and Environment (KDHE), which tracks genetic conditions, provided grant funds to set up the clinic, which will operate a half day each month. Sivamurthy credits KDHE for their partnership to offer patients expanded local care.

In addition to PKU, the clinic will see patients with galatosemia, MCAD, and biotinidase deficiency - other conditions in which the body does not effectively produce or process essential substances.

"These are not acute metabolic conditions, but they do require long-term treatment and follow-up," he said. "We chose these four diseases because we felt they could be safely and effectively managed, and it would save families from frequent trips to Kansas City."

"This is no small thing for families," he said. "We're gaining experience and hope to use it to expand care to more remote areas of Kansas."

With the Arkansas doctors, protocols were developed for Sivamurthy and his team to care for patients in Wichita. Dr. Stephen Kahler, an Arkansas geneticist, will consult.

"We're ready to go. All the pieces are in place. We're just waiting for Dr. Kahler's Kansas licensing and credentials to be processed," Sivamurthy said.

KU Wichita Pediatrics' expected addition of a metabolic geneticist is likely to alter the Arkansas-Wichita connection, he said, but will also open new opportunities. "I'm confident that the expanded partnership will drive further growth and cooperation. Not having a metabolic specialist on site has limited how much we can use the resources Arkansas offers."

"It's daunting to build a program from scratch," Sivamurthy said. "But we've sown the seeds that will give the new geneticist a running start."


KU School of Medicine-Wichita