For children suffering from seizures, a precise diagnosis is key—right along with a precise treatment plan. Where medication fails to prevent certain types of seizures, the ketogenic diet is proven to help children’s bodies protect against seizures in some cases. The team that makes up Lurie Children’s ketogenic diet program uses the diet to treat a variety of seizure types and epilepsy syndromes with the goal of avoiding side effects of medications and controlling seizures for children like Gianna and Gavin.
When Gianna was diagnosed at birth with an extremely rare genetic disorder known as chromosome 15q trisomy, her parents were eager to welcome her into their family of five and learn how to care for her special needs. At roughly 18 months, Gianna began having regular seizures. When doctors at the local hospital were unable to provide a diagnosis, her parents conducted their own provider research and decided to take her to Lurie Children’s.
A series of tests confirmed Gianna was experiencing generalized focal seizures—and they were worsening. “Eventually, she was having 30 seizures a day,” says Gianna’s mother Michelle. “None of the medications seemed to work.”
At four months old, Gavin began having almost 20 seizures a day. Medications prescribed by his doctor were not helping to reduce the seizures, so his parents made an appointment with a physician from the multidisciplinary epilepsy program at Lurie Children’s. “We knew it was one of the best places for him to be,” says his mother Holly. At Lurie Children’s, a video electroencephalography test confirmed Gavin was suffering from infantile spasms and focal seizures. Injections of corticotropin cured the infantile spasms, and medication helped reduce the frequency of the focal seizures.
But when he was three years old, Gavin also began having several tonic seizures a day. That’s when the epilepsy team at Lurie Children’s suggested Gavin’s parents consider the ketogenic diet, a low-carb, high-fat regiment that has been shown to reduce seizures in children with epilepsy. The diet causes the body to convert fat into substances called ketone bodies, which are then used for fuel in many cells of the body, including the brain. This sends the brain into a higher energy state so it can help prevent seizures.
In both the cases of Gianna and Gavin, the epilepsy team at Lurie Children’s presented the patients’ parents with the option of the ketogenic diet as an alternative to the forms of medication that were ineffective in preventing seizures. The ketogenic diet works in a fundamentally different way than medications. Scientists have found many different mechanisms of action which contribute to the diet’s success, but one common theme is that instead of causing sedation, a common side-effect of medication, the diet can actually make a child more alert and focused.
Since starting the diet, both children have seen significant results.
Under the ketogenic diet, Gavin’s tonic seizures have occurred only about once a day and he requires less medication to manage his condition. A life with fewer seizures and less medication means Gavin has more energy, development and time to spend with his family and enjoy his favorite music.
Gianna has been seizure-free since starting the ketogenic diet three years ago, and no longer requires anti-seizure medication. In addition to the astounding health benefits, “I feel like she’s just become such a little personality as well,” Michelle says. “She had lost a lot of functions due to the seizures. She used to say mama and then she stopped saying it. Now she’s gained so much back and she goes to pre-school now. It’s helped her whole situation and her personality which is so fun and so social.”
Ketogenic Diet Program
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.
The nationally prominent Lurie Children’s Division of Epilepsy boasts an extensive range of services, allowing it to provide the highest level care for children with various forms of epilepsy.
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.