Katie's Story

“Katie was not born with a seizure disorder. She acquired one,” says Melrose, Katie’s mother.

In January 2005, Katie, an honor student and elite athlete, came home from swim practice with a headache. Within 24 hours, she developed a 104.5 degree fever. After the fever subsided, Katie insisted on going back to school, which is where her first grand mal seizure occurred. She was rushed to the hospital and diagnosed with viral encephalitis as her brain began to swell. The doctors called Katie’s situation “very grave” and weren’t sure she would even make it through the night.

To control the seizures, she was put into a medically induced coma. Several attempts to bring her “up” failed. After 35 days, the doctor made a medication change that stopped Katie’s brain from seizing, finally allowing her to come out of her coma.

Six weeks later, her seizures began again. Over the next year and a half, Katie was on seven different anti-seizure medications. But she was still suffering from nearly 50 seizures a month.

“We knew we were dealing with a very difficult situation, and we were told that there would only be a 5% chance that any other medication would be effective in controlling Katie’s seizures,” says her mother.

That is when Katie and her parents began researching the ketogenic diet. Impressed with the initial studies, they took Katie to the Epilepsy Unit at the Children’s Medical Center at the Medical College of Georgia. At 19, Katie was the center’s first ketogenic patient.

The diet soon began to work. Katie’s monthly seizure count went from 6-12 a month to 1-3 a month.

Recently, the family discovered KetoCal, which has provided Katie with more food options, including blueberry muffins and pancakes.

“Just those two foods make a world of difference to her,” says Katie’s mom.

Using the ketogenic diet has dramatically reduced Katie’s seizures. Though certainly not the easiest diet for a busy 19-year-old, she makes it work. And the results are definitely worth her effort – she has gone from 50 seizures a month to less than three a month.

Katie’s life has changed dramatically in the last year and a half. She is not away at college on a swimming scholarship like she had anticipated. But she has a full, rewarding life, thanks to the ketogenic diet. She takes classes at her local college. And she is back in the pool, working with children with disabilities in the Adapted Aquatics Program at her neighborhood YMCA.

Although her life is not what she expected, Katie’s mother says, “she is most determined to continue to live her life and accomplish her goals, and we have no doubt that she will.”

Delaney's Story

Three-year-old Delaney Frohock was born with Agenesis of the Corpus
Callosum, a congenital condition that can leave its victims handicapped for life.

As recently as August 2005, Delaney had been having long seizures, and had been hospitalized15 times within eight months. Typically, she experienced 10 seizures per day, some lasting as long as two hours. She could no longer hold her head up, she was losing weight and eating became impossible. She needed to be in a wheelchair so that she could be held upright. Her condition did not improve after being put on multiple anti-seizure medications.

The Blue Bird Clinic at Texas Children’s Hospital initially diagnosed Delaney as failing to thrive, and placed her on a feeding tube in August 2005. Within a couple of weeks, they initiated the ketogenic diet and prescribed KetoCal. KetoCal, manufactured by Nutricia North America, is a nutritionally complete medical food that is indicated for children with intractable epilepsy on the ketogenic diet.

Delaney’s condition improved dramatically and her seizures dramatically reduced in frequency and duration. At the first month check-up, Delaney’s seizures were reduced to seven per day and after the next month, they ceased completely. She also was able to stand up and make eye contact.

In February 2006, food was reintroduced orally and Delaney began taking half of her intake orally and half through her feeding tube. In May 2006, her EEG reading showed no seizure activity.

Delaney Frohock suffered from multiple long seizures each day, which hampered her growth and development. After being placed on the ketogenic diet and prescribing KetoCal, Delaney’s condition dramatically improved. She has not had a seizure since January 2006, and her health care providers and parents credit the ketogenic diet and KetoCal.

-- This information is provided with consent from the Frohock family.