Finding a Still Space in a Mad, Mad World

I had an interesting discussion with the doctor who helps us dose cannabis and monitor Sophie's progress on the oil. We spoke a bit about the obduracy of Certain Neurologists. She agrees that it's a real and maddening, frustrating puzzle and also believes that the deeply wired ethic of the field demands a sort of ego superiority over the patient and definitely over the parent of the patient. When I try to look back in an unbiased way at the many encounters I've had over the years with neurologists from all over the country, I am really struck by the negative similarities that go way beyond what we might have once called bad bedside manner. I've agonized over my biases -- am I too angry? too stubborn? too opinionated? too too? I wonder whether the neurology field attracts a certain kind of personality or whether the personality is affected by the field -- a kind of chicken or egg coming first conundrum. We all grew up hearing the expression It isn't brain surgery, after all! to describe even the most herculean task in comparison to what is perceived as the most difficult branch of medicine. Yet, there's this arrogance that reveals itself in the cannabis revolution as a cover for what might just be a nearly primitive fear or shame, a tail-between-the-legs kind of running away when the dog isn't chained to a post, lunging and barking. This morning as I contemplated the universe, I nearly laughed aloud at an article in the paper describing the creation of an atomic clock so precise that it won't lose or gain a single second in 15 billion years -- roughly the age of our universe. Get me one of those.

Yesterday, Sophie didn't have a single seizure -- not even a small one.

Cannabis Update Number 3,876,342 with a Profanity Warning

If you haven't noticed, I've retreated from the frenzy that is the medical marijuana/cannabis/hemp world. I told you a few weeks ago that I gave up my advocacy "position" due to exhaustion, burn-out and some other personal things. Sophie continues to take Charlotte's Web three times a day, and we still wait for the higher ratio oil that gave her the best seizure freedom. While not seizure-free, she is dramatically better than she was a little over a year ago, and as soon as her intestinal situation is completely stable, we plan on continuing the drug wean. Meanwhile, thanks to those who are not exhausted and burnt out, the fight for access to cannabis oil rages on. I watched the video below with great interest as several of my friends appear in it, but every time a physician came on, no matter how respected, my heart sunk. The arguments against this oil are, to me, bullshit, through and through, and it makes me almost sick to my stomach to hear them.

Ironically, the longer I live in this world of refractory epilepsy, the more seizures I've seen, the more drugs I've given Sophie and the more I observe their side effects and utter inefficacy, the more suspicious I become of the pronouncements of these estimable doctors, their condescension and obduracy regarding cannabis. I don't believe cannabis is a miracle. I don't believe it's a cure or know enough about it to call it a cure, but to argue against these children having the chance to try it, is unethical. Just the other day, a reader sent me an email expressing her desire to try cannabis for her nineteen year old son who is currently on four anti-epileptic drugs and still seizing hundreds of times a day. She told me that she didn't want her son to get high, and she told me that her neurologist did not approve of her trying the oil until more evidence came in. Her neurologist told her wrong information, and her neurologist works at Emory University. I'd say, good Lord! or even Holy Shit!, except that it so doesn't surprise me.

I don't mean to attack the medical world in its entirety. Obviously many truly do hold to heart the tenets of their profession and are beautiful professional healers. Plenty of doctors, including Sophie's, are incredibly sensitive and supportive. Many, too, are open-minded and curious. The rest of them? Well, let's just say that at my vantage point -- earned in twenty years -- I've learned to quite defiantly raise my eyebrows at best, and at worst, think: f**k 'em (another reason why it's probably best that I advocate here on my personal blog and not march into and out of political offices or worse, neurology departments, to beg for their mercy). I imagine that I'm a bit of a pariah in the World of Diplomatic Neurology. Again, at this point -- twenty years in -- I actually don't give a damn. I know that's a difficult stance to take on when you're new to this horrific game, and I can't actually advise people to do the same, but I can state, quite firmly the following things:

* If your child has refractory epilepsy, you have nothing to lose in trying cannabis oil.
* If your child is on multiple drugs and still seizing, the drugs are not working. It's not the moon, an impending virus, the fake candle fumes, your relationship with your spouse or family dynamics. When drugs work, seizures stop.
* If your child is on multiple drugs and still seizing, and your neurologist tells you to add another one, that's unethical. In twenty years, I have never met a single child with refractory epilepsy whose parents have found a magic pill to control his or her seizures for the long term without side effects.
*I have met many children who have tried upwards of twenty drugs with no success whose parents then back off so many drugs, accept the increased seizures and better quality of life, try cannabis and see its positive effects.
* That is our experience (above), and it's a travesty that just because I live in California where the product is available and legal, we get the relief.


Whew. I got that off my chest.



I can't seem to embed the video/documentary attached to this very informative article in TIME, but here's the link:

Pot Kids

Realm of Caring News Conference

So, we sat with Sophie and hundreds of other people in the above auditorium, listening raptly to Josh Stanley, a few of his brothers (there are 6 of them and 11 kids in total!), Paige Figi (the mother of Charlotte, of Charlotte's Web fame), and Ray Mirzabegian who brought us all together, as well as Jason David who you can read about here. The auditorium was some old-timey venue, and before the meeting started, I felt as if I were on the set of a Fellini movie. Honestly, sometimes my life feels like a Fellini movie on the good days -- and perhaps an Ingmar Bergman on the bad. The news conference was wild and amazing and emotional. I joked to a friend that those Stanley brothers are like Jesus and the Apostles, and I don't mean that in any religious sense. I mean they're on the edge -- perhaps of a sort of revolution -- and they're gorgeous.

I'm glad that I didn't end up wearing the Teletubby costume, because it's all going to happen. We're going to get Charlotte's Web here in California, very, very soon, and until then I have a small bottle of tincture, given to me by someone very instrumental in this whole revolution, and we're going to try it. Maybe even tomorrow.

We talked about facts today; we heard stories (lots of stories from families with kids with epilepsy who began seizing after vaccinations, who began seizing out of nowhere, who were seizing in utero, who have been diagnosed with syndromes and traumatic brain injuries and from people with multiple sclerosis and arthritis and cancer, etc.). We learned about the scientific evidence that cannabidiol has neuroprotective qualities, that it's being used effectively for patients with PTSD, with depression and with all number of neurological disorders and cancer. It went on for hours and hours and it was insane and it was completely and utterly sane.

I will keep you posted. Email me if you absolutely need to know every detail or if you have specific questions. I will try to answer them. If you live in one of the more backward states (ahem -- Texas, above all and most of the southern states), have no fear. These people are working toward making this medicine available to every child that needs it. There are studies being conducted or begun in many of the major epilepsy centers in the country. It will take advocacy and education -- not activism -- because of the draconian federal laws in place that make marijuana equal to heroin and methamphetamine as a strictly controlled narcotic.

I am, of course, excited to see whether this will help Sophie in particular but I'm also certain, now, that it's helping a whole lot of kids like her, for real. It is at once inspiring and utterly draining which I can imagine is mainly because it comes, for us, so very late.

We shall see.