“Olivia was born a warrior She’s fought many battles, from platelet transfusion, to feeding and breathing on her own, heart defects, ear tubes, strabismus, diaphragmatic hernia (twice recurrent) but most of all she’s been a true epilepsy warrior,” says Sandy Browning, Olivia’s mom.
At five months old, Olivia, now 23 months old, started experiencing muscle spasms. Concerned her parents took her to a pediatrician where she was misdiagnosed twice with having digestive issues. “My motherly intuition felt like Olivia’s spasms were the result of something else. Her spasms were in-controllable, all day and night. She couldn’t sleep, eat well or smile. We didn’t see our precious girl smile for three months. It broke my heart,” says Sandy. “She was diagnosed with infantile spasms and began steroid medication. Her brain activity was extremely abnormal. So much that we weren’t allowed to leave the hospital that week until she was monitored with medication.”
The steroid medication reduced Olivia’s spasms but after a while began ineffective. “We tried eight different medications. I felt hopeless. For months we had sleepless nights,” says Sandy. Olivia was then diagnosed with Atonic Epilepsy and turned to the expertise of Lurie Children’s Epilepsy Center for Olivia’s care. “From our first visit at Lurie Children’s, I knew things would be different. Olivia was weaned off all of her anti-convulsive medications. In January, we started the ketogenic diet.” The ketogenic diet is used to control epilepsy in children by forcing the body to burn fats instead of carbohydrates. The diet is a carefully prescribed ratio of fats to carbohydrates and protein.
Since February 2017, after three weeks of beginning the ketogenic diet, Olivia has been 100% seizure free. “Food is Olivia’s medicine. No other medicine has helped her like the ketogenic diet. It’s been amazing to see our beautiful, brave little girl smile again, watch her stand, move, babble and sleep,” says Sandy. “I’m so grateful to Lurie Children’s Epilepsy Center and ketogenic diet team especially Robyn Blackford, the lead registered dietitian for ketogenic diet.”
Lurie Children’s ketogenic diet program offers one of the country’s most comprehensive and multidimensional care programs of its kind. Led by registered dietitian Robyn Blackford, our ketogenic diet team currently serves approximately 175 patients and families. Through the combined efforts of our dietitians, nurse practitioners and social worker, we have the capacity to provide care and support that extends beyond the hospital walls not only for your child, but for your entire family.
Each year we treat at least 2,200 children from around the country and the world, making us one of the busiest child epilepsy centers in the Midwest. Best known for helping infants with complex and hard-to-treat (refractory) epilepsy, our comprehensive epilepsy center offers advanced diagnostic testing including video EEG (video electroencephalography) for children of all ages. We perform about 2,000 video EEG studies a year.
The Division of Epilepsy is part of Lurie Children’s Clinical Neurosciences, which is ranked 8th in the nation for child neurology and neurosurgery by U.S.News & World Report.