by Margo Frazier, Public Relations

Ashley Herrin, left, and her mother Shelby Brigman.

Nine-year-old Ashley Herrin eats an enormous amount of fat to survive. Every three to six months, Ashley and her mother Shelby Brigman drive two hours to MUSC to participate in a program that not only encourages the fatty diet but also monitors its progress.

Called the ketogenic diet, this high fat, low carbohydrate and protein diet serves as anticonvulsant medicine, enabling children with epilepsy like Ashley, who once endured hundreds of seizures daily, to live seizure-free.

Offered by MUSC’s Pediatric Epilepsy Program, the ketogenic diet tricks the brain into thinking that the body is in starvation, forcing it to switch from glucose (sugar) to ketones as its energy source. Children are limited to 75 percent of the RDA requirement which is four-parts fat to one-part carbohydrates and proteins. For up to two years, children and their families must withstand limited food and fluid intake—only sugar free sodas and water are allowed—and regular checkups on an average of every one to three months in order to eventually enjoy eating normal foods.

Epilepsy is a brain disorder involving an excessive discharge of brain cells that causes seizures. However, seizures may occur as a symptom of an illness, such as meningitis; and these may go away when the illness goes away. This is not considered epilepsy; these are considered secondary seizures. Epilepsy occurs when seizures recur in the absence of active illness or when brain injury has resolved. For example, a patient may develop epilepsy (due to residual brain injury) after the meningitis has been treated, or after the patient has recovered from stroke. About half of epilepsies in children, however, occur because of genetic factors, and there is (or was) no brain injury/malformation. One to 2 percent of the population has epilepsy; 80 to 90 percent are under 21 years. Because of its full range of symptoms, epilepsy, especially in children, may be confused with other illnesses. Nonepileptic spells have been mistaken as seizures. Children with epilepsy like Ashley usually have learning disabilities. First diagnosed in kindergarten, Ashley was unable to speak or read, plus her motorskills were slow.

Moreover, according to David Griesemer, M.D., director of the Pediatric Epilepsy Program, detecting epilepsy is easier than recognizing the type of epileptic seizure. The seizure type most people associate with epilepsy is the grand mal or tonic-clonic seizure. Symptoms include violent shaking, loss of consciousness and tongue or cheek biting. However, the majority of seizures like the absence seizure which Ashley suffers from, have very subtle characteristics. Children may pick at their clothing, stare, or turn their heads in one direction. These little movements are usually misinterpreted as inattention.

To classify the seizure and determine the best medical treatment-surgery or diet, the program uses a video electroencephalography (EEG) to detect any abnormal brain activity and its location. If the activity involves the whole brain then the ketogenic diet is the best treatment; if a specific location is involved, surgery is the best solution.

Patients are hooked up to the EEG for three to five days to record and capture as many spells as possible. Once the spells have occurred, an edited tape of the minutes before, during and after the spell is created, then reviewed by the doctors. If surgery is needed, then electrodes are placed directly on the surface of the brain to more precisely localize the source.

The ketogenic diet begins with a fatty Sunday breakfast. On Monday, the child is admitted into the hospital for three to five days to test the urine for ketone spillage. Once the spillage is higher than what it should be, the child gradually begins the diet. The child must be able to handle the drastic change in the metabolism, so doctors start with one-third, two-thirds, then the full diet.

Gigi Smith, RN, program coordinator, stresses the importance of complete family and community commitment. “A lot of time must be invested into the diet. There must be family commitment. Our culture focuses a lot on food; it is used as a reward for doing something good. It is very easy to fall off the diet. Parents must get day care, school and grandparents to agree to the diet. We strongly recommend they buy the book ‘The Epilepsy Diet Treatment’ to teach them how to tailor their grocery lists to their child’s condition.”

Shelby Brigman agrees, “I have six children, four living at home. All of them had to adjust. We have to curtail the temptation. There are certain times they could eat. Ashley cannot eat with her family, locks are placed on the cabinets, the older children can’t bring food into the house, and we don’t go to the restaurants.”

Brigman continues, “At school, we’ve had to educate her principal and teachers on the diet. I take Ashley her lunch and eat with her. I don’t think she could handle eating with other children. She’s been tempted twice and fallen off the diet.”

Health risks are connected to the ketogenic diet. Kidney stones may form and hypoglycemia could develope. Even though it is a rare occurrence, there may be metabolism complications. Because this is a high fat diet, the risk of high cholesterol increases. Triglycerides, which are fats in the blood stream, may result in heart attacks.

Despite the potential health risks, parents like Shelby are grateful for the diet. She has seen huge improvements in her daughter. “Her motor skills are enhanced; her mind is sharper and she is learning how to tie her shoes.” Even though Ashley is still unable to read, she is learning mathematics. Since beginning the diet on April 21, Ashley has been medicine and seizure free.

Since its inception in 1994, the Pediatric Epilepsy Program has placed five children on the diet with positive results. Since this program is extremely labor-intensive, only four to eight children are placed on the diet by MUSC staff at any one time.

It is the only formal program in South Carolina and one of three in the region. Duke University School of Medicine and the Medical College of Georgia in Augusta are the other existing programs. It is an outgrowth of the Children’s Hospital, and it plans to expand to include adults.