Words Like Daggers: Santa Cruz 2012

One morning in June someone says some terribly wrong things. Try as I might to overlook, forget, forgive, pretend it never happened these statements become impossible to erase.

The pink elephant in the room.

What is said is about a defenseless child with a devastating diagnosis. 

A child who has daily debilitating seizures yet by some unseen miraculous force, she persists. A child who has been riding the roller coaster of severe epilepsy since the tiny age of five months. An ongoing tumultuous ride with ups and downs, twists and turns, despair and surprises. 

A child who was prescribed and has been under the influence of barbiturates and benzodiazepines. A child who experienced tolerance and underwent withdrawal of these drugs. A child who developed way beyond prognosis but has lost almost all of her skill-set to seizures, drug tolerance and withdrawal syndromes. 

My child.

"Leave Her Alone. Her Life Force is Leaving. She Is Dying."  

The words are spoken after I attempt to parent my child's standoffish behavior toward said person. 

"Leave Her Alone. Her Life Force is Leaving. She Is Dying." 

I wish I could just apply the old "sticks and stones" adage here but every attempt leaves me more and more hollow. 

"Leave Her Alone. Her Life Force is Leaving. She Is Dying."

Had the words come from a stranger maybe it wouldn't be an issue today. But it was no stranger who said this. It was kin. And that makes it especially hard to forget after all this time. And even though an apology comes two years after the fact it still feels inexcusable. 

"Leave Her Alone. Her Life Force is Leaving. She Is Dying."

Words like daggers. 

Writing a short blog piece on it in the hopes of processing this further has been on my mind for a very long while. I grappled with how I would share this, who will relate and who might be affronted by it. 

Well I don't know how to get past it when everyone pretends it never happened. But I know it did happen and I know it still hurts. 

I could end here with a soapbox rant now on how amazing and strong my Delilah is but I won't. I have quickly learned what an exceptional gift from God my daughter is. I can only hope that some day others will soften their hearts and realize this as well. 

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.

First Seizure Ever: A Retrospective

I am thinking of her very first seizure. The eternal, just over an hour generalized tonic-clonic dated August 3, 2004. How strange it was to witness this perfect little baby, only five months old, completely out of control.

Out of MY control, and at a time when I had finally been feeling IN control. Which in retrospect is a pseudo control because clearly, we are not in control. Clearly.

A new mother with no mom friends, I had established a rhythm we were all satisfied with. At work about ten hours per week, sometimes baby Delilah would be there with me, hanging out in her sling, sucking on her hands. Other times, she’d be at home spending quality time with Dad. Nursing on demand, co-sleeping, living in the world, taking the best care I could of her, Josh and myself. Within five months, with a solid pattern established, I hit the ground running. This was gonna be great. My confidence was soaring. I had this mom thing down! 

And then… BOOM. 

I had never seen a seizure before. My perfect infant in Josh’s arms, one arm stiff and twitchy. Her head and neck jerking, craning, cocking to one side over and over and over as if listening for some unheard sound. Her little facial muscles twitching, creating expressions I’d never seen a baby make. The funny little sound escaping her throat, so deafening. What is she doing?

I remember stepping backwards, fearfully, slowly backing away…right into a wall. Had the window been open, I might have jumped. But instead Josh shouts 911 and I grab the phone. I dial but I don’t know what to say. Something is wrong with my baby, she is shaking and she won’t stop. The voice on the other end says, How old is she? Has she had a seizure before? Are you alone?

A seizure. So that’s what it is.

I never realized how tiny our apartment really was until I had three EMT’s and several firefighters from Station 5 standing in my living room. At that moment I felt very small, helpless, confused, afraid. So afraid.

Two doses of Diastat (valium delivered rectally) and just a few minutes elapsing, the seizure rages on. I'm still stomaching having had witnessed my infant receive valium twice in her rectum and then I hear, “We have to take her in? Where do you want her to go?” Hospitals. I hadn’t even thought about where I’d take her in an emergency. We had chosen a private, alternative minded pediatrician and hadn’t planned on any crises. Ever.

In just her t-shirt and no diaper, we ended up at the nearest hospital where Delilah seized for just a little over an hour.

Many things went through my mind while watching my little girl seize. And as the minutes ticked away, nurse after nurse, doctor after doctor, specialist after specialist walked in and within a few minutes walked out, some mouthing “fuck.” or “shit.” to each other. Sometimes I can be really good at reading lips.

The seizure persisted and had clearly evolved, her whole body was convulsing at this point, her eyes wide open staring at nothing. She was unresponsive. That funny little sound emerging from her throat, like a skipping record, a needle stab in my heart with every skip.

I told the Universe to take her. What would be left of her? How can someone seize for this long and survive? What’s her quality of life going to be? Is her brain going to be damaged? 

And then the seizure stopped. Not by itself but by mega loading doses of drugs Diastat, Phenobarbital and finally Ativan, administered right in her little left shin bone. And now she is so sedated, she is unable to breathe on her own and requires a tube down her throat. 

And so she remained in this state of drug-induced unconsciousness, a tube in her throat breathing for her for two days. An eternity. Covered in pinpricks all over her body, markers of all the failed attempts by numerous medical staff to get a line in her. Multiple monitors, lines, tubes, wires, stickers, fluids everywhere. Beeping, whirring, churning, strangers, voices, social workers, nurses, doctors, neurologists, specialists, eeg technicians, the guy who did the spinal tap, the volunteers. The family room, the shower, the vending machine, the cafeteria, the family resource room, the mother’s room…

Ahh, the mother’s room… where I could lactate via machine into a bottle and save it for later, and all the while I could read the tabloids that I never ever read. An escape. Yeah right. And the whole time, while I look at pictures of Angelina, Oprah, Jennifer… the ache in my heart competes with the ache in my breasts. Full of milk, my body is dying to nourish Delilah. Waiting for her to wake up. 

First Post Ever.

I'd like to tell you Delilah's story. It is a story seven years old and counting. Many people have urged me to put this story down in writing.  It is so riveting, complex and layered, oh so layered. And here I am, my first blog post ever and I don't know where to begin. And starting at the beginning seems so daunting, dated and scary.  So I'll start with tonight.


Tonight, Delilah was helping me trim leaves from one of our cannabis plants. Yes. A marijuana plant of the Cannatonic strain. It is her medicine. We were trimming and rinsing leaves, preparing them for the drying process in order to make a tincture. While she was swirling her hand in a bucket of water and leaves, she suddenly stops and says "I'm done." Really? I say. There sure are a lot of leaves left. Are you sure you are done? "Yes, I am done." Okay, I say. I will finish up for you."Thank you" she says and walks away toward the television: we'd been watching "It's the Easter Beagle, Charlie Brown" while working. 


As soon as she makes it to the tv, she goes into a full on tonic clonic seizure. Banging her forehead on the edge of the tv table so forcefully and smacking the side of her cheek on the hardwood floor so painfully, I can still hear both sounds, though I cannot decide which sound is worse. Not that I have to. But surely the dent left in her swelling forehead is visually by far the most difficult to process.  


I carried her into the bedroom and while she seized I slathered arnica cream on her forehead and cheek, all the while cooing and soothing her through the 212th tonic clonic seizure she's had this year.  212 is an awfully big number. Particularly for this little girl who last year was having about one tonic clonic seizure per month.  Which really wasn't bad for someone diagnosed with a catastrophic form of epilepsy.  


Damn that Dravet Syndrome. 


Back to tonight.....she fell asleep as is the norm post seizure and I slip an arnica 30c pellet through the gap in her mouth where her two front teeth had fallen out weeks ago. We were alone, her and I. Josh was on his way home from work. When he walked in, he was surprised and sad to see us in our recovery phase. She really has begun to improve these last two months. It is always a difficult blow to all of us when she goes down.  


Our creaky floors gave Josh away and in an instant Delilah is awake.  She sits up, dented bluish egg in the middle of her forehead, right cheek bright red and puffy and says, "Hi Dad. How was work?"  My jaw is now on the floor right next to my socks. Really?  Josh answers as if nothing, "It was fine thank you." Then suddenly Delilah is out of bed and I know where she is headed. Earlier she had drawn a picture for Josh. It is a portrait of him with a note that says "Dear Dad, This picture is for you. Love, Delilah." She had hidden it behind her club house door. She goes over and gets it and does her usual routine when she gives a gift: "Close your eyes Dad." She puts it on his lap and says, "Open your eyes." He does. He loves it. He changes his clothes and slips into bed with her. She wants him to read "Red Rackham's Treasure" and he does. She listens attentively here and there, slipping in and out of light sleep. It is almost dinner time and she knows it. 


As much as I hate these seizures, I feel grateful for her quick and strong recovery, goose egg and all. Earlier this year she was having upwards of 20+ tonic clonic seizures in succession within a ten hour span, up to three times per month. That's roughly 40-55 seizures per month. Delilah's clustering seizures required phenobarbital and/or Depakote loads to stop. We were in the emergency room or ICU 3 times per month. That's three times per month since February....every month until May 30.  


May 30 was our last drug load and cluster. On June 4 we began using medical marijuana to treat Delilah's seizures. 


Organic, fresh juiced, cannabidiol (CBD) rich cannabis....ahhhhhh.  Sounds pleasant doesn't it? Except that it is truly a harsh drink, very green and very, well...green. And this type of cannabis doesn't get anyone high (yes, I've tried it), except if you heat it then you convert all those lovely anti-anxiety, anti-spasmodic, anti-inflammatory properties into tetrahydrocannabinol or THC.


Twelve isolated tonic clonics in June. Eleven isolated tonic clonics in July. Three this month thus far. 


Isolated tonic clonic seizures, with remarkable recoveries, no IV loads, no loss of cognitive function, no motor losses, no loss of language, no hallucinations, no insomnia, no ICU stays. Back to school 2 hours per week, play dates, day trips, library visits, walks, drawing, painting...it's all coming back. Recovery.

The isolated tonic clonic seizure is a twisted dream come true.  


Please don't wake me.