An Access Public Service Announcement

Did you notice while watching the Dateline special Growing Hope on Sunday night that nearly every single commercial was for a pharmaceutical or for a pharmaceutical for your dog? Are you at all as bothered by the irony as I? I doubt anyone who wants to be relieved of their incontinence problems, their aching joints or their failure to maintain an erection has to beg their legislator to get relief.


I'm drawing up a few days' worth of Sophie's Charlotte's Web cannabis oil in the above photo. I told Oliver to hold that camera a little higher so you can't see any chins. You can see my Italian peasant woman arms, though, that soft and terribly strong part of my body that I defy anyone to put down as they've served me well as a mother for over twenty years. As you can see, I'm at the end of the bottle which means I can pick up the telephone or go online and order some more from Realm of Caring.

I have access to this lifesaving medication.

Thousands of families don't, though, and are either medical refugees or waiting to get access, at the mercy of politicians. I won't talk about doctors in this post, though, at least the misguided ones. Some people not only live in states without access to cannabis oils but also have doctors who stymie their desire to try it.

Sigh.

You can help. Go to The Coalition for Access Now. 

On Devinsky and Friedman's Opinion Piece in the New York Times About Medical Marijuana

I'm going to fly through this post with my initial reaction to the New York Times' recent opinion piece on medical marijuana, titled We Need Proof on Marijuana. That means it's what I think on the fly after reading it, in light of my own experience giving Charlotte's Web to my nineteen year old daughter for the last several months. And since I'm a very fast typist and perhaps an even faster thinker, I'm going to slow myself down and number these thoughts. Here we go:

1. First of all, Orrin Devinsky and Daniel Friedman are huge in the pediatric epilepsy world, and I know both of them. I haven't seen either in as many years as I've lived in Los Angeles, but they are excellent doctors and good people.
2. I'm immediately put off by the line drawing that accompanies the article -- a Cure All Magical Elixir -- and its implication that there's something fishy going on.
3. The rest of the piece is patent bullshit and makes me despair again over the vast and seemingly irreparable rift between the professional epilepsy world and the rest of us -- the caregivers of these kids with refractory seizures.
4. My daughter has been on twenty drugs in as many years and not a single one of them has done anything to control her seizures or heal her in any way. In fact, most of them have caused her harm: discomfort, pain, irritability, anorexia, systemic abnormalities, headaches, ataxia, more and different seizures, nausea and the risk of death. In the short term and over the long term. 
5. On Charlotte's Web Sophie is now having no seizures for weeks at a time. For the first time in her life. Unless Sophie has been faking multiple seizures a day for her entire life, this is no placebo.
6. If Sophie were to die, five years from now -- hell, TWO years from now or even several months from now -- because of the "long-term effects of medical marijuana," I would be grateful that she had those days or months or years free of seizures for the first time in her life and in the life of her two brothers who have watched her seize daily for their entire twelve and fifteen years. I am decidedly NOT grateful for the life that the so-called "studied medications" have allowed her to live.
7. Devinsky and Friedman state their concerns for the long term effects of medical marijuana on the child's brain. I understand their concerns, and I understand it's in their interest -- and the hundreds of thousands of children with epilepsy's interest -- to study this plant, but when they write this: Where is the data showing that marijuana is effective for epilepsy? Although parents may report improvements in their children, it is important to remember that the placebo response is powerful, and the placebo response is greater in pediatric than adult studies. Before more children are exposed to potential risks, before more desperate families uproot themselves and spend their life savings on unproven miracle marijuana cures, we need objective data from randomized placebo-controlled trials I feel the condescension that I have grown to expect dripping from their mouths, the page, the screen, the universe they live in and have lived in as long as I began navigating it on June 14th, 1995. I have an unequivocal lack of confidence in that universe.
8. I am glad that Devinsky and Friedman are appealing to the federal government to remove marijuana from its draconian place as a Schedule 1 drug, but this train has left the station and, given the tone of this piece, frankly, I don't give a flying foo-foo what the Almighty Neurology World thinks.

I'm not just seeing. I'm spitting stars.

Medical Marijuana, Part 4,346,986

Sophie and I went to the beach yesterday afternoon with a friend of mine and her daughter, a friend of Sophie's. We didn't actually go down to the water, though. We just walked a bit with our girls and then sat a bit with our girls and ate french fries with our girls. When Sophie had a small seizure, I said to my friend that maybe she was witnessing the very last seizure of Sophie's life or the beginning of a dramatic reduction in her daily seizures.

And why was I this hopeful?

Canatonic.

Yes, the name of the high dosage CBD extract that I purchased today is called Canatonic. I don't even know how to describe the morning's proceedings, the visit to Dr. Bullwinkle, the visit to the pharmacy, the procurement of the goods, the drive back home -- the actual giving it to Sophie. I think what I'll do is show you the texts that I exchanged with a friend (I'm in blue and the friend is yellow) -- and please note the time because the speed with which I acquired a medical marijuana card made me think I was a sort of Alice going down the rabbit hole.

If you think I'm crazy, I'm here to say that despite the Alice in Wonderland reference, I've seen and been crazier during the last eighteen years. I got a tincture of high concentration CBD today for less than I paid the Canadian pharmacy in Canada for Sophie's prescription of Onfi, which was 1/8th the cost of the Onfi at my local drugstore. We're giving it a whirl. Reader, keep your fingers crossed.