Tuesday, September 10, 2013

Medical Marijuana Update: Part 6,749,234 in a series



I participated in a webinar today with a national epilepsy group for which I've worked for many years. The guests were Josh Stanley and Page Figi, both Coloradans featured on the recent CNN special titled Weed. Page is the mother of the little girl Charlotte whose refractory seizures have been dramatically reduced since she started taking the high CBD medical marijuana that the Stanley brothers produce on their farm in Colorado. There were only a few of us on the call, and it was very spirited. I'm not sure how the other parents on the call felt -- some were from states that criminalize marijuana, so their chances of even trying the stuff are quite slim -- but I felt like I was pulsing with electricity. The feeling reminded me of the enormous rushes of adrenaline and probably cortisol I've felt over the years whenever the prospect for a new treatment for Sophie arose. Even if there's great hope attached to that prospect, it's still stressful and uncomfortable, and I felt, for much of the day, as if I were jumping out of my skin. I think all the mindfulness meditation has actually made me acutely aware -- mindful -- of the effects of stress on my body. I'm not talking about the literal weight that has accumulated but the actual physical characteristics of stress: my racing pulse and heartbeat, my brain quick and poised, my thinking sharp, my ability to articulate heightened emotions, and a gnawing feeling in my stomach that has nothing to do with hunger.

I've felt like that for much of the day, mainly because I am frustrated by the overall inaccessibility of this product for our children and because I am excited that it might very well help Sophie's seizures. Throw in the fact that we're at the forefront of something that could very well be revolutionary for people with uncontrolled epilepsy -- well, you should understand that state of my nerves.

Did you know that many of the children who are using it successfully have been weaned from their AEDs?

I don't even want to type that in a normal font it's so outrageously wonderful.

I have to settle down, though. I have to be patient. Josh Stanley said that maybe, quite possibly, the high CBD stuff would be available in California by the end of this year and certainly by the beginning of 2014. He spoke about education and advocacy. He cautioned about activism. It's a process, and it's happening.

Help me wait. Talk me down. Still my heart. Unshiver my skin. Bandage my wounds. Lay me down.

18 comments:

  1. Oh friend, I hope it all comes to you as quickly as possible, the medicine and some bit of relief.

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  2. At least you live in California, and not Oklahoma or Georgia or any of the other myriad states where it's unlikely to become available at all anytime soon. This is an exciting prospect and my fingers are crossed on your behalf!

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  3. This is great news. I am keeping my fingers crossed!

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  4. I am so sorry that I didn't read this before I went to bed.
    Elizabeth- this is fine news and good news and this may (MAY! HONESTLY MIGHT!) be what you need, what you have been searching for so diligently for all these years and of course you are hyper-aware, every nerve ending lit because this is your daughter. This is Sophie.
    I wrote that and tears came to my eyes and I am thinking of all the Sophies and all of the children whom this might help. My god. Let it be so.
    Early morning love from across this vast, wild, crazy country. Straight to you.

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  5. We're here, doing all the above....breathe.
    love,
    yo

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  6. Dare I say it? Unsheathe the hope.

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  7. Breathe in, breathe out. Sit in the sun. Sing. Eat Thai food. That is my five part plan for a restless heart.

    I'm so heartened to hear this promising news!

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  8. I'm grateful that you are providing this information - that you can participate in these discussions - I cannot! I get so ANGRY - it's incredible to me that there is something that can help our children and we do not have access to it!!! It's so incredibly random considering the amount of poison I've been giving Bryn - and the lengths I've had to go to to get some of these meds. We've been in an emergency situation - all of us dealing with seizures - and for some reason it's ignored. I've grieved the loss of my girl in bits and pieces - seizures have taken her away from me - it's like watching her play in traffic and repeatedly get hit. I know you understand - again I'm grateful that you can speak for us and provide this information -XO

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  9. How about dancing your feelings, not waiting for an answer, but dancing the possibilities? What would the music be? What steps? Flashdance? A mosh pit? The Rolling Stones' "Start Me Up?" Vince Guaraldi and the twins on the Charlie Brown movies? I can imagine any/all of the above.

    I'm so excited about those possibilities...

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  10. Just reading that got me very very excited. I can only imagine how your are feeling.

    wv = kisful

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  11. I'm with Karen - dance, woman! Just reading about your flush of emotion set my heart to beating faster. I hope this all comes to fruition and it makes a difference for you all.

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  12. the end of the year and 2014 seem like eons away! I am hoping with you .....

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  13. Oh Elizabeth, how could it be that the medicine Sophie needs is so close, the source IDENTIFIED, and still the wait. I know you want to get on a plane and fly to the Stanley's farm yourself. I would do it for you, and bring it to you. Why is that not possible?!!! I am sorry I am climbing up on the rooftop with you, shouting in the wind. Why not activism? Explain me that?

    Unshiver my skin. God. I understand that feeling. But not with stakes as high as this. Until Sophie tries this treatment, it will be hard to lay you down. I wont even try. I'll just breathe with you. And pray to whoever's listening. And if there's anything else it occurs to you that I can do, please let me know!

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  14. That was worth getting digging for my reading glasses.

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  15. What we should remember Elizabeth (and that is why I was the one who invited you to the pediatric cannabis group on facebook) is that there are many many stories. No one size fits all and so each of us adds a slight bit more of information. Some are placing too much expectation on CBD. SEgev has been getting it (now up to 5mg/lb) for several months (it's even free here until he reaches 16). From the available research (which is very very scant, hence the reluctance of physicians to jump on the bandwagon) CBD cannot stop seizures from starting but does slow their propagation in the brain. This is consistent with what I've seen with Segev. His really big seizures start but then peter out. Perhaps just as important he is showing signs of DEVELOPMENT, at age 15, that while, minute are significant.

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  16. i'm hoping with you that this speaks of progress, meaning, moving forward.

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