Monday, November 10, 2014

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


  1. You are doing the best job possible, I think. You are advocating for your daughter for what is working for her, and you are swimming against the tide to do it. Why you have to swim agains the tide is the question--and I guess you already asked that. I think you have every right to swear. Look at the kids who've been helped by cannabis. It's the political and medical powers who make parents reluctant to try it. A tragedy and a crime, I say. I'll swear right long with you.

  2. I shared the article on my Facebook page. I'm curious to see who agrees with me and who doesn't. Perhaps a good way to prune the list.

  3. AMEN TO THIS! SO friggin true. Even though we are only 4 and ½ years into this journey with Hayden, I am 100% in agreement and to that end, WE, the parents of theses beautiful children KNOW THEM BEST! We know when something is working and when it is not ~ we know when our children are happier, healthier and having a better quality of life. We have to listen to our own 'inner voices' and believe that we can be their best advocates. We have to be, it is our job. Our calling.
    Thanks for sharing Elizabeth. xoxoo Meg

  4. This is absolutely one of the best blog posts I've ever read. Maybe THE best.

  5. Sometimes it's important to break the law.

  6. I will never ever understand how doctors can prescribe so many severely debilitating drugs but refuse to support parents trying cannabis oil.

  7. I think that was pretty eloquently expressed. And it was very balanced, despite your right to be frustrated and angry on behalf of those who are not being helped.

  8. Very good video. As for doctors and the medical establishment, doctors and nurses like compliant patients. It makes their job easier. Just do as I say. And no, not all nurses or doctors are like that but it does happen. I am of the opinion that people need to do what's best for them, what they believe is right for them.

    Take care of yourself woman. Sending hugs.

  9. I believe some medical professionals can be more shackled by dogma than religious zealots.

  10. Denise said it; I'll just add that you are eloquent and have the wisdom of experience. You deserve to be HEARD.



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