Madison, Wisconsin – For the past year, 14-year-old Alaina Shelsta has been receiving life-saving care at American Family Children's Hospital for GLUT1 deficiency syndrome, a rare condition that causes her to experience numerous seizures per day because she cannot get sugar into her brain as fuel. The family has struggled for years with her condition. They saw several specialists with no effective treatment option.
In April, shortly after the COVID-19 pandemic hit, the severity and frequency of Alaina's seizures worsened, causing her doctors to propose a new treatment idea. Naturally, the family was worried that making the trip from their Milwaukee-area home (Richfield, WI) to American Family Children's Hospital would put their child at a higher risk of contracting COVID-19.
But the family made the choice to drive to Madison anyway. The doctors, nurses and staff at American Family Children's Hospital worked diligently to ensure Alaina and her family could safely receive the testing and treatment she needed.
During her stay, Drs. Santhi Logel and Ellen Connor, pediatric endocrinologists, and Dr. David Hsu, a pediatric neurologist, worked together to treat Alaina's seizures with a novel approach that increases glucose transport to her brain. This approach required close medical follow up as an inpatient including frequent blood tests and continuous EEG (electroencephalogram) monitoring of her brain waves. To protect Alaina and other children in the hospital from COVID-19, special rules were put into place so that specialists like Drs. Logel, Connor and Hsu "visited" with Alaina strictly by video, carried into her room on a portable tablet. Only Alaina's nurse, her parents and her assigned hospitalist physician were allowed into her room. This procedure and these protocols worked well for Alaina's care; her seizures greatly decreased, and she was able to go home after 5 days in the hospital.
The family is back in Madison this week for further adjustments and for repeat EEG, to see if the treatment is still working. The specialist doctors are allowed into the rooms with the proper personal protective equipment, so Drs. Logel and Connor will meet Alaina in person for the first time.
Video Update: Alaina's Story
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