When Rebecca and Stuart Galbreath brought their twin boys - Jake and Brody - home, they quickly realized something wasn't quite right.
"When we'd go to take the twins' picture, Brody would look at the camera, but Jake would be looking off," recalls Rebecca. At first, they thought he might be blind. But he was also crying more than other babies and never slept.
An MRI prescribed by his neurologist at Atrium Health Cabarrus quickly pinpointed the issue: Jake was suffering from leukodystrophy, a rare type of gene abnormality that affects the brain and spinal cord. One of the main side effects of the disorder is epilepsy. His first seizure was when Jake was 1 1/2 years old. Shortly after, his parents took him to Levine Children's Pediatric Neurosciences to see Katherine Van Poppel, MD, director of the Pediatric Epilepsy Program and Ketogenic Diet Program at Levine Children's, for treatment options.
"He was having clusters of seizures every day that could last 10 to 15 minutes," says Dr. Van Poppel. "He has also failed many medications for epilepsy without any improvements in his seizures."
The Galbreaths wanted nothing more than to improve Jake's quality of life. Running out of options, they turned to a well-known diet in the epileptic population to see if it would control Jake's seizures.
A popular diet for a unique case
You might have heard of the ketogenic diet in the context of weight loss. Practitioners of the diet are told to drastically limit their carbs and instead get 90% of their calories from fats and protein. This puts the body in a state of "ketosis," where fats turn into "ketones" — a fat byproduct that supplies energy to the brain.
And while it's helped plenty of people shed pounds, it's also been used for years among epilepsy patients to control or even eliminate seizures.
"Two-thirds of people will have their epilepsy controlled by medication fairly easily," says Dr. Van Poppel. "But the other third of patients with uncontrolled seizures can be candidates for the diet."
While the diet has found success among many patients, Dr. Van Poppel cautions that surgical treatments are often a better choice for some patients because surgery is potentially curative for a select number of cases — and the diet can be difficult to maintain for most patients. She also notes that the diet is not necessarily a natural way for the body to function, so anyone on the diet must have their nutrition monitored closely.
An immediate difference
For patients with epilepsy, the effects of the ketogenic diet are known right away. For Jake, the difference was quickly evident. After a week of implementing the diet, Jake's seizures slowed down, and eventually went away.
"In Jake's case his seizures became completely controlled and we were able to reduce the amount of the medication he was taking," says Dr. Van Poppel. "The diet also helped to improve his alertness, improve his sleep, and allow him to make more developmental strides."
To ensure he is getting the right nutrients, Dr. Van Poppel and a dietician work together to run frequent lab tests with Jake so that the nutrients and medicines can be tweaked as needed.
"The happiest little kid"
With his frequent seizures, Jake had a tough start to his young life. But ever since changing his diet, he couldn't be a happier little boy and has a much better and stable quality of life.
"He's so happy all the time," says Rebecca. "He loves to sit and watch a movie with his nurse. And he laughs at everything."
After this long and winding journey treating her 5-year-old child, Rebecca urges parents not to be afraid to try out a doctor's suggestions, even if you might have some reservations. Brain disorders are different for every patient and all medications and trials can have different results to each person. Her family's leap of faith transformed Jake's life — and allowed him to be his energetic 5-year-old self and participate with his twin and family in daily activities and outings.
