Delilah: A History in the Key of Keto

Delilah was born on a rainy Valentine’s Day in San Francisco, California. When she was only five months old she had her first seizure, an hour long status event. She was heavily sedated, intubated and would “recover” only to continue to experience more seizures requiring more sedation and experimentation with pharmaceuticals.When her first seizure occurred we immediately researched alternatives to pharmaceuticals and learned about the Ketogenic Diet. Through her pharmaceutical trials, as Delilah continued to seize, we pleaded with doctors to let us try the diet but we were denied.  At one point we were threatened with child protective services for refusing to start a new medication.  We exhausted all the frontline pharmaceuticals available, some even twice, including one we would later learn is contraindicated in her condition. Finally, at age 2 years and eight months and addicted to Phenobarbital, she was diagnosed with Dravet syndrome and we were allowed to begin this miraculous diet.  

Despite the seizures and the damaging pharmaceuticals over her first two years, Delilah would go on to develop in ways we had been told not to expect. The ketogenic diet reduces seizures. Delilah was completely seizure free for the first sixty days on the diet before seizures returned, but the seizures had changed dramatically. They were so manageable. The seizures were short, self-resolving without medical intervention and were also infrequent, sometimes going three months between tonic clonics.

The Ketogenic diet maximized Delilah’s learning potential. In fact, the ketogenic diet unlocked Delilah’s voice. Prior to the diet she spoke in shrieks and squawks, gleeful bird-like quips and the first syllable of some words.No one could understand her but me. Within the first ten days of keto Delilah began speaking. Her FIRST WORDS were in fact a FIRST SENTENCE. It was an exclamation so powerful and meaningful that I can still hear it ring: “I AM DELILAH.  I AM DELILAH. I AM DELILAH.”

Over the course of four years, as Delilah continued to improve and stabilize, we were able to gradually reduce Phenobarbital. With each reduction a new child emerged. The Ketogenic diet supported her development. She was happy, creative and engaged.  She successfully attended a public school and while in kindergarten would often read aloud to her peers during recess. Reading, writing, making friends, making art, and riding her bikewere things that Delilah strived for.

Unfortunately in 2010 as our Phenobarbital dose got smaller, doctors insisted we cross over to another medication to address the occasional tonic clonic that would occur in the early morning hours. Sadly within three months of this new treatment, Delilah began experiencing clustering seizures, frequently requiring rescuewith benzodiazepines. Soon thereafter all seizures started occurring anytime she slept, sometimes up to 30 in one night. The seizures were debilitating and seemingly impossible to control. New medications were added and the diet, labeled useless, was tapered away. Delilah began to ”regress”.

Despite all pharmaceutical interventions, Delilah continued to seize. All medications seem to help at first but this was always shortlived. There were no developmental gains only losses. By now, Delilah had become addicted to a daily benzodiazepine, one of the medications her neurologist prescribed. Daily we worked on ways to improve Delilah’s overall health and maintained a strict clean, organic, gluten free diet focusing on gut health, but ultimately our family made the difficult decision to advocate for a medication wean. We had seen Delilah’s potential and we were desperate to recover her. Our neurologist, having had witnessed her deterioration supported our decision and supported our benzodiazepine taper over an eleven month period.

October 2014 will mark two years since her last dose of medication. Benzodiazepine withdrawal and its subsequent syndrome are difficult and at times frightening, but returning to the ketogenic diet has proven to be miraculous once again. We are currently maintaining a lower ratio than before and Delilah’s seizures remain self resolving and her recovery time is much improved. Her spark is more evident and we have been delighting in witnessing many of her “lost” skills return. It is truly like a light being turned on in a dark room.We have every reason to believe that this will only continue to improve over time. I strongly urge anyone caring for a child with epilepsy to consider the ketogenic diet or at the very least implement a simple, clean organic diet with abundant healthy fats for optimum results in development and seizure control.