Pediatricians often track a baby’s progress using key developmental milestones. In 2023, six-month-old Dylan Sonnenberg began to lose some of these abilities, prompting concern from her pediatrician. The decline led to her admission at Cedars-Sinai Guerin Children’s, where she was evaluated by pediatric neurologist Jeffrey Swarz, MD, and pediatric endocrinologist Bahareh Schweiger, DO, MPH.
Testing revealed that Dylan was suffering from severe hypoglycemia and infantile spasms, a type of epilepsy considered a neurological emergency. “The brain requires sufficient glucose to function, and hypoglycemia frequently leads to strokes in infants like Dylan,” said Swarz. “It was later determined that she had the ABCC8 mutation, causing congenital hyperinsulinism. The infantile spasms were likely related, but we can’t say for sure.”
Dylan is among more than 350,000 children and adolescents in the United States affected by insulin-related illnesses such as diabetes. November is recognized as National Insulin Awareness Month and includes World Diabetes Day.
Her parents, Michelle Tang and Ron Sonnenberg, described their reaction to the diagnosis: “We were not very optimistic at that point,” Sonnenberg said. “We were devastated when we first learned her diagnosis.”
Hyperinsulinism results from excessive insulin production by the pancreas and can cause dangerously low blood sugar levels. This condition increases the risk of long-term health issues due to possible brain damage from repeated hypoglycemia episodes.
“If not managed adequately, there can be long-term challenges, including ongoing developmental delays and learning deficiencies,” Schweiger said. “With proper medical intervention, many children achieve reasonable metabolic control and normal functionality.”
Dylan’s initial treatment involved daily steroid injections and frequent hospital visits. “She was in and out of the hospital,” Tang recalled. “We spent New Year’s Eve in the hospital that first year because Dylan had to be monitored for adverse reactions to the steroids. But it was a small price to pay for us, as parents.”
Currently, Dylan’s glucose is regulated through gastrostomy tube feedings with continuous overnight feeds for stability. While lifelong multidisciplinary care will be necessary due to her history, Schweiger noted positive developments: “Her prognosis is great, and her hyperinsulinism is showing signs of becoming less severe, with no recent spasms to report.”
Two years after her diagnosis, Dylan has made significant progress in motor skills and social development. “Dylan’s motor skills are improving—she’s walking with help and pulling herself up,” Tang said. “She’s very social with other children and is showing progress with speech and language skills.”
The family credits Cedars-Sinai for Dylan’s improvement: “We are eternally grateful,” Sonnenberg said.
Cedars-Sinai Medical Center is located in Los Angeles, California. Founded in 1902, it serves as both a treatment center—with over 50,000 admissions reported in its 2022 annual report—and a training hospital under President Thomas M. Priselac (https://www.cedars-sinai.org/about-us/annual-report.html).
For further information on pediatric innovation at Cedars-Sinai Guerin Children’s see Cedars-Sinai Discoveries: Innovation and Collaboration in Pediatrics at Cedars-Sinai Guerin Children’s.
