The fact that 14-year-old Nilu is here today is nothing short of what her mom calls a miracle. The active teen was rushed to the hospital after having her first of several seizures.
“We were so worried and we were so emotional,” said Niranjala Wickremasinghe, Nilu’s mom.
Nilu had status epilepticus, a life-threatening condition.
“She was in very bad shape, to say the least. She had ongoing seizures for three months. She was essentially comatose during that entire situation and tried about seven or eight anticonvulsive medicines, none of them were helping her seizures,” explained Eric Kossoff, MD, Pediatric Neurologist, Johns Hopkins Children’s Center.
That’s when Kossoff decided to try something different, a high fat, low-carb diet, much like Atkins.
“Bacon, eggs, whipping cream, and oils, you know very high fat foods,” Kossoff said.
Doctors aren’t exactly sure why the 90 percent fat diet works but, “About half the children we put on it will do better and about ten percent become seizure free,” Kossoff explained.
Since Nilu was unconscious, her diet was delivered through a feeding tube.
“When it works, it works pretty quickly,” Kossoff said.
One week later, Nilu woke up.
“I feel that I’m a really lucky person. I mean, I got another chance to live again,” said Nilu.
Now, with a new clinical trial underway others like Nilu could get the same second chance.
Nilu was on a modified Atkins diet for six months once she emerged from her coma. She is now back to a regular diet and is able to control the few short seizures she’s had since with medication. The most common side effect of the diet is constipation, temporary higher cholesterol, and kidney stones are also possible.
STATUS EPILEPTICUS: Sometimes clustered or prolonged seizures (usually 30 minutes or longer) develop into non-stop seizures, resulting in a condition called status epilepticus. It is a condition that is a medical emergency because the longer a seizure lasts the less likely it is to stop on its own. Any type of seizure can become status epilepticus and it could lead to brain damage, or even death. (Source: epilepsy.org)
HIGH-FAT KETOGENIC DIET: The Ketogenic diet has been used since 1921 to treat several forms of epilepsy in patients who don’t respond to anti-seizure medications. It is a diet made up of high-fat foods and very few carbohydrates. It works by triggering biochemical changes that eliminate seizure-causing short circuits in the brain’s signaling system. Anecdotal evidence also suggests the diet be used in the treatment of brain tumors, Alzheimer’s, stroke and Parkinson’s disease, and several human and animal studies have found tumor reduction after treatment with this diet. Researchers suspect that cancer cells require glucose for survival, and the ketogenic diet deprives them of this necessary fuel. One report described two children with inoperable brain cancer, whose tumors shrank remarkably after treatment with the ketogenic diet, leading to long-term survival of both patients. This evidence shows that the diet may affect the body’s chemistry on a far more basic level than once believed. What is well-established is that when it comes to seizures, the diet’s therapeutic effects last longer than those of medication. (Source:hopkinschildrens.org/High-Fat-Ketogenic-Diet-Misunderstood-Underused.aspx)
KETOGENIC DIET MISCONCEPTIONS: The most common misconceptions about the diet are that it causes dangerous biochemical changes, is inappropriate for use in infants and very young children, causes weight gain and fatty build-up in the arteries, and that it should be a treatment of last resort. John Freeman, MD, and Eric Kossoff, MD, Pediatric Neurologists at Johns Hopkins Children’s Center, say that all are partly or entirely false. The diet does require monitoring by a dietarian and a neurologist, which also may discourage patients and health-care professionals from using it. Several studies have shown the effectiveness of the diet in reducing or eliminating seizures entirely. In a 2001 Hopkins study, 75 out of 83 children who were on the diet for a year experienced full resolution or partial reduction of seizures. Many of them continued to do well even years after stopping the diet. Dr. Freeman and Dr. Kossoff say the diet does have side effects. They include vomiting and constipation, and a temporary moderate spike in cholesterol, which will go down after one to two years on the diet. The doctors also recommend the diet as a first-line treatment in two rare metabolic conditions—Glut-1 deficiency and pyruvate dehydrogenase deficiency, both marked by seizures and other neurological problems. (Source:hopkinschildrens.org/High-Fat-Ketogenic-Diet-Misunderstood-Underused.aspx)