Cheering for calm

Meet Hannah Jones, 17, this year's team captain of the 2018 RBC Race for the Kids at Comer Children's.

Hannah Jones made a choice to change her diet and, ultimately, her life.

Diagnosed with pediatric epilepsy in 2011, Hannah has been off and on epilepsy medications that caused deteriorating stomach issues, migraines, and excess weight gain. The upbeat teenager was forced to miss more the 23 days of school last year because of seizures and side effects from her medications.

Her doctor, Chalongchai Phitsanuwong, MD, at the University of Chicago Medicine Comer Children’s Hospital, shared with Hannah and her mom, Tonya Jones, a possible solution—the ketogenic diet—a therapy prescribed for the treatment of pediatric epilepsy when medications fail.

Dr. Phitsanuwong, who Hannah affectionately calls “Dr. P,” is a pediatric neurologist and epileptologist in the Level 4 Pediatric Epilepsy Center at Comer Children’s. Last year, he offered Hannah and her family an option to try the diet before moving forward with the Vagus Nerve Stimulation (VNS) procedure. During the procedure, a device is inserted into the chest to block the electrical impulses that cause seizures.

“Hannah has tried and failed so many medications and even combinations of medications over the last six years since her diagnosis,” Tonya said. Deciding it was worth a shot, Hannah chose to give the diet a chance before the procedure. Her decision has paid off.

“The diet has worked so successfully that Hannah was able to stop medication, and she is decreasing other medication that she has been on for five years,” Tonya said.

Hannah’s complications, from stomach issues to headaches, are gone. Her seizures have wound down to nearly zero and the teenager has more energy for cheerleading practice, finishing her senior year of high school at Joliet Catholic Academy, and serving as the honorary team captain at the 2018 RBC Race for the Kids at Comer Children’s this fall.

Hannah is determined to spread awareness about her ketogenic diet success, which is why she is excited to walk at the RBC Race for the Kids, on Sunday, October 14 alongside Dr. P. The RBC Race for the Kids offers families and friends a day of fun while giving families a platform to spread awareness and support groundbreaking research.  To date, the race has raised more than $2.4 million for research at Comer Children’s.

“I want others to know that the diet is not impossible to do,” Hannah said “Just simply changing your diet can change the way you feel.”

Before starting the diet, Hannah and Tonya consulted with Stephanie Schimpf, a ketogenic dietitian. Schimpf helped support the family along with Dr. Phitsanuwong through the diet, which is customized to each child’s calorie requirement and nutritional status.

The ketogenic diet consists of a high percentage of calories from fat, with an adequate amount of protein and low percentage of carbohydrate intake. This high-fat, low-carbohydrate combination causes the production of ketone bodies creating a ketosis state. It is believed that the process of ketosis has an anti-seizure effect, which has helped Hannah to calm her seizures.

After Hannah started the diet, Schimpf checked up on Hannah and provided suggestions for meals while she traveled on vacation or new ideas of foods to try. “There were times we would just call her and Stephanie would pick up,” Tonya said.

For Tonya, she finds it hard to believe the results of the diet and that Hannah’s new favorite food is zucchini. For Hannah, she says she is happy for the calm in her life as she finishes school and pursues the next stage of her life, college.

The calm has also spurred a new sense of advocacy for her. As the race’s cheerleader, Hannah plans to raise donations for her race team, Keto for the Calm, along with Dr. P. and her mom.

Join Hannah and her Team Keto for the Calm to support kids. Donate to the cause to support groundbreaking research at Comer Children’s, or register to walk or run the 5K along with Hannah in Hyde Park.  

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