Cannabis Oil Update And Another Regurgitation of Sophie's History For Emphasis*

photo by Lynn Johnson for National Geographic Magazine

My friend Ray Mirzabegian is featured in an article about medical marijuana in this month's National Geographic magazine. Ray is the man who has a young daughter with refractory epilepsy, who drove to Colorado several years ago when he heard about the the Stanley Brothers and their cannabis oil. He learned everything he could about the oil, grows and makes it for a hell of a lot of children and adults here in southern California through Realm of Caring California. He's also one of the nicest guys on the planet, and I don't know what I'd do without him.

Right now, we've gone back to the original California Charlotte's Web that Ray makes and have stopped using Charlotte's Web Hemp Oil. While CWHO "worked" moderately well for Sophie, we've been struggling to find the same degree of seizure control and have decided to go back to the product we used when all the really good stuff happened. Sophie is, of course, on a little more than half of the benzodiazepine that she was on a year and a half ago, and if you read anything about withdrawing benzos, you realize it's a horror show. I've read adults report that they can experience withdrawal symptoms months and months after they're off the drug completely. If it's hard for you to imagine how difficult the process is, imagine peeling back your scalp and bathing your brain in a powerful narcotic twice a day for eight years. That would be Sophie. I don't think we can properly assess cannabis oil's true effectiveness until she is off the benzo completely, and that might take us another six to eight months. Then we've got to work on Vimpat, another powerful drug that she's been on since October, 2008 when it was newly approved for use in epileptics over the age of 17. Do the math.

In the meantime, though, she has some stunningly good days and no really bad ones. We are quite tolerant of one seizure or so a day, especially since they're brief and she seems to recover rapidly. A bad day might be several seizures in a day with drooling and clamminess, but they're not happening more than once or twice a month. Did you know that we haven't used Diastat, the rectal Valium rescue med, since we began the oil? KNOCK THREE TIMES.

I went to a party on Saturday night for a friend of mine and found myself engaged in conversation with a couple of people about our experience with cannabis oil. I told one man, a physician, that Sophie had been on 22 drugs in her twenty years. He said, That's impossible! There aren't even 22 antiepileptic drugs! I began naming them and then called it a day when he conceded that he hadn't heard of several of them. When I got home later that night, I wrote them all down and sent them to my friend to forward on to him. Here's what the list looks like:

Sophie’s Drug History 1995-2015

ACTH

Prednisone

Nitrazepam

Carbamazepine

Depakote/Depakene

Phenobarbitol

Vigabatrim

Felbatol

Neurontin

Lamictal

Banzel

Klonopin

Ativan

Diastat

Keppra

Zonegran

Topamax

Trileptal

Frisium/Onfi

Vimpat

Micronor (progesterone to help mitigate the hormonal swings that exacerbate seizures)

IvIg (intravenous immunoglobulin, adminstered for ESES, 2010, 2013)

Ketogenic Diet (two six-month trials, 1995 and 1999)

What was interesting to me was when I checked on the drugs -- when they were approved for use by the FDA and for what age child. You know where this is going, right? Many of those drugs were brand-spanking new when we gave them to Sophie (like Vimpat, the one she's been on for seven years), several were only available through compassionate protocol or through pharmacies in England and Canada or Germany and many were approved only for use in children over twelve or seventeen, if at all. At no point was Sophie on one of these drugs at a time, but rather on multiple combinations -- a near constant titrating up and down and adding and subtracting for the first six or so years. I don't feel like listing the side effects of these drugs or even the reasons why we discontinued them. Think anorexia, thrush, extreme irritability, sleeplessness (for YEARS), severe sedation, dehydration, recurrent fevers, rashes, hallucinations, psychotic behavior, increased seizures, new seizure types, headaches, nausea, ataxia, excessive drooling, impacted stool, depression (yes, Sophie's neurologist diagnosed depression many years ago, so we discontinued the drug). Well, I guess I listed some of them. 

I don't remember when, but at some point I just plain refused to add a third drug to a regimen until one of the two she was on could be weaned. Not a week goes by that I don't hear of kids on three, four, five and up drugs, still seizing. What the hell? When Sophie was about twelve, I refused to try any more new drugs unless Jesus Christ offered them to me. I firmly believe that relying on Jesus was no more or less scientific than relying on the old dart board that the epilepsy docs used. No one reported me to Child Protective Services. Sweet Jesus -- he never showed up.

Did I mention that at no point was Sophie seizure-free or even better? Can I emphasize enough that despite these various combinations of drugs/poisons and the good intentions of several superb neurologists and scientists, no one really knew what the hell was going on in Sophie's brain other than that it was supremely dysfunctional? Did I mention that during these nineteen years (and continuing today), Sophie received Chinese herbal teas and acupuncture as well as regular appointments with an osteopath, homeopath and nutritionist? Did I mention, too, that after two rounds of vaccinations, even as her immune system was fully compromised by high-dosage steroids, she was never vaccinated again? I firmly believe that without these complementary therapies, the refusal of vaccinations and a diet rich in whole foods, she'd either be dead or far more compromised than she is today.

Without Ray and all the people who are working so diligently to research cannabis, Sophie would also still be seizing.

*Please humor my repeating this stuff over and over if you've read it, over and over. I still get new readers and emails weekly asking for information. Every now and then, I feel the urge to evangelize a bit. 

Sidewalk Stains and an Update on the "Disappeared" Article

I dragged myself out for a walk today and tried to stop and smell the roses. I noticed this stained heart in the sidewalk and would extend the metaphor out, but I don't have it in me. If the tips of my shoes were in the photo, I might call it Don't tread on my heart. A little further on, I noticed a stain in the exact shape of the Italian map. I'd extend that out to being a sign that I am supposed to go to Florence or perhaps Sicily.

I also noticed a long dark hair curled in the shape of a Japanese samurai warrior's head with a pigtail on the edge of the sink when I stepped out of the shower. You can take that where you'd like to take it.

Karen Lowe, the writer of the article in National Geographic told me today that the "tech team at the magazine is evidently working on bringing the article back up." We shall see, right?

What's on your agenda today?

Still Searching for the Reason Why National Geographic Censored/Killed the Vaccination Article

I know that most men, including those at ease with problems of the greatest complexity, can seldom accept even the simplest and most obvious truth if it be such as would oblige them to admit the falsity of conclusions which they have delighted in explaining to colleagues, which they have proudly taught to others and which they have woven, thread by thread, into the fabric of their lives.

Leo Tolstoy 

I consented to that interview, to those photographs and to allowing that magazine to probe into some of the most upsetting events in my family's life. I consented to that interview with the hope that I could play a small part -- however infinitesimal -- in changing not the debate itself, but rather the tone of the debate. I thought that the writer Karen Lowe did so, and that by publishing her story about our conflict, our experience, our story and our truth, National Geographic was doing some real unbiased reportage that showed nuance, something out of the ordinary and in fact, quite extraordinary.

I guess I'm wrong. Despite the fact that the article got nearly two hundred comments on the website for the short time that it appeared after February 14th, as well as thousands on its Facebook page and many hundreds of "shares," when you click on the link now, a blank, white page comes up with a couple of ads marching along on the top. Navigate the Sea of Cortez By Night, one reads, and SUBSCRIBE FOR ONLY $12 says another.

The magazine has not replied to my inquiry about why I can't access the article, and I'm still waiting to hear from Ms. Lowe who is waiting to hear from the magazine.

Shut down, whited out, censored, the low smolder whose heat nipped -- just barely -- at the fabric of my own life is now a cold, steely resolve.

Take a Deep Breath and Change the Conversation Along with National Geographic

photo by Emily Berl for National Geographic

While I wouldn't say this article does justice to my deep feelings of betrayal by and mistrust for the American public health and medical system, I am grateful to Karen Lowe and Emily Berl for their sensitivity in reporting this story about our family's experiences. It was a tumultuous week for me leading up to and even after being interviewed. Reviewing such a traumatic time and even re-discovering the facts -- that Sophie was vaccinated, suffered a reaction and was then re-vaccinated two times even as her immune system was decimated by high-dosage steroids -- disturbed me on perhaps a deeper level as it came all at once, not tempered by the years and years of crisis and caregiving. As the days go by and the hysterical media as well as more-hysterical citizen scientists, and friends have moved on to what's new and exciting, I feel calmer and less wounded even as I contemplate the draconian calls to coerce the population into vaccinating their children.  When I agreed to this interview, my intent was to help to change the tone of the discussion, and while I don't believe the article really addresses my very grave doubts and mistrust in the vaccination program overall, I think it does justice to the need for a more compassionate discussion, and I appreciate that National Geographic has made an attempt to do so.

Here's the article.

And mark my words, there's more to come here.

Waiting

There are days like today when the waiting seems more than ridiculous. The waiting seems not only interminable but insane. We waited for The Neurologist and then we waited for Blood-work. We'll wait for results.

We've been waiting -- for what? -- for twenty years.

The desire to flee, to shove the baby under my arm, the toddler into a backpack, the child onto my back, the young woman into her chair and to just run the hell away is so strong that to fight it would be death.





I did an interview with a journalist this past weekend who is writing a story for National Geographic about the vaccination "debate." They wanted to cover the story of a family who believed in vaccinations and whose child had a negative reaction to a vaccine and therefore decided to delay their other children's vaccinations. I consented to the interview because I want to change the tone of the "debate." In response to a few questions, I pulled out some old documents in Sophie's medical file and found a small journal that I had kept beginning in January of 1995. I don't think I've looked at it in eighteen years. Sophie was born on March 8, 1995. On May 3, I wrote this:

I had a couple more entries and then this:

The rest of the journal consisted of precise notations of seizures and medications and every tiny little bit of behavior that we noted and noted and noted as we waited for things to get better.

I pulled out Sophie's vaccination record for the journalist as well -- that hideous yellow card buried in a file at the back of the file cabinet. I was stunned by the progression of events. I've never written about that, but I will. Wait on that.

Ironically, the past few weeks have turned my inchoate fear into a strengthened resolve. The journalist asked me whether the CDC or Powers That Be could do or say anything to sway me to agree to vaccinate my children by their dictates. I said, No. I said that they could continue to work on vaccine safety. They could do studies on the long-term health of the unvaccinated (it's been my direct experience that my two boys' health has been extraordinary compared to the general health of my friends' children and I'm curious to know whether this is an accident or something to think about in an immunological sense). I said they could acknowledge the risks of vaccines, and the many children and adults who have suffered from them, like Sophie. They could wait before whipping the country into a ridiculous fervor. They could disengage themselves from The Business of Medicine. They could acknowledge their mistakes. They could make amends. As for the herd? I said, Bless their hearts.

Staycation, Day Four

Today's activities included a visit to the Annenberg Center for Photography and an over-the-top free exhibit celebrating 125 years of National Geographic. The exhibit was called The Power of Photography, with "powerful" an understatement. The way the photos were arranged, the video installations, the explanatory movie about the power of photography -- well, it was really mind-blowing. I was overwhelmed with emotion several times -- and both Henry and Oliver were mesmerized as well. My favorites were the photographs shot in Afghanistan by Lindsay Addario -- this one in particular (there was no photography allowed in the exhibit, so I pulled it online). Addario's commentary in the short movie shown was compelling -- particularly when she spoke about the power of photography to change the world, how an image is seared into our consciousness and how her desire was to show, expressly, the plight of women.

I learned a lot more about the suffering in the Congo -- Marcus Bleasdale's photographs of the children who fight in the wars and are then conscripted to mine for gold (most barely into their teen years) -- our gold, our insatiable need for gold -- and the more than 5 million people who have died there in the last decade. 

It took my breath away, made me think about the over-the-top response our country has over the deaths of several thousand. The whole exhibit made me think of the wide world, the breath-taking world, the scope of the planet and all living things and our own, often spoiled existence here in the United States.