In many ways, Hannah Soderberg of Rochester, Minnesota, is a typical 14-year-old. She loves horses, her iPad, her guinea pig and her twin sister. But Hannah faces complex health concerns most teens don't. And because of that, there is no such thing as a simple medication change for Hannah.
When Hannah was 4 years old, she developed a rare condition called febrile infection-related epilepsy syndrome, sometimes called FIRES. The condition caused Hannah to have multiple daily seizures that persisted despite trying many medications. Her Mayo Clinic care team recommended the ketogenic diet — a high-fat, low-carbohydrate diet — to help control Hannah's seizures.
"We've followed the ketogenic diet since Hannah was 5," says her mom, Cheryl Soderberg, who works at Mayo Clinic's Rochester campus.
By following the ketogenic diet, Hannah's typical dietary intake includes an extremely limited amount of carbohydrates. The carbohydrates she consumes are tracked, along with fat, to reach an optimal balance to prevent seizures.
The diet has helped dramatically reduce Hannah's seizures. But she still needs medications and supplements to manage the epilepsy and other health conditions, and those medications contain carbohydrates, too. In a case like Hannah's, that can be a problem.
"For most patients, carbohydrates in medications are a negligible part of their diet," says Wendy Burgess, Pharm.D., a Mayo Clinic pharmacist. "But for patients on a ketogenic diet, managing carbohydrates in medication is challenging. A single dose of Children's Tylenol can contain nearly 4,000 milligrams of carbohydrates, which would be too much for Hannah and could lead to increased seizure activity."
Dr. Burgess created a chart that lists the carbohydrate count for each of Hannah's medications — a tool used by the family and her Mayo Clinic team, including neurologists, dietitians, endocrinologists, pediatricians and physical medical specialists. Each time a medication is changed, pharmacists in the Mayo Clinic Outpatient Pharmacy determine the carbohydrate content. That often involves phone calls to multiple manufacturers. When needed, the pharmacy provides medication options to reduce or avoid carbohydrates.
Cheryl says she has come to see the pharmacy team as part of their extended family. "They smile whenever we pick up meds. They even crack jokes," she says. "Everyone seems genuinely happy to see us."
Cheryl gets Hannah's medications at the Mary Brigh Pharmacy at Mayo Clinic Hospital — Rochester, Saint Marys Campus, which is open 24/7 year-round.
"Being an employee, I especially notice Mayo's culture is living strong in the Pharmacy," Cheryl says. "They always make us feel like Hannah's needs come first."
Working with the Pharmacy team, "we are able to successfully manage Hannah's carbs, which ultimately helps decrease her seizures," Cheryl says. For Hannah, that means more opportunities to do what she loves: take horse riding lessons, play on her iPad, cuddle with her guinea pig, and hang out with her sister.
"Being able to use our clinical knowledge and experience to make a difference in the lives of patients like Hannah is what pharmacy care is all about," says Dr. Burgess.