Wednesday, February 21, 2018

The Alchemy of Sophie and Me (with an update)

Lunch in the neighborhood with my girl today


Sophie's doing pretty well.

I've been tinkering with her cannabis medicine under the guidance of Dr. Bonni Goldstein. I've also been reducing the Onfi.  She had a bad month, beginning with that red full moon thing and stretching on for weeks. A bad month means a bunch of tonic clonic seizures, lots of clamminess and drooling and difficulty walking and swallowing. It's hideous, really, and each time it happens, I have to go through this sort of willed calm and resignation. I fear her death. I'm nothing but brutal and honest, you know.  At some point during the third week of this, Sophie had a flurry of seizures, and Dr. Bonni suggested that I double up her dose of CBD. Really? I asked. I trust this woman for a myriad of reasons, but mostly because she's been absolutely spot on when it comes to dosing Sophie.

I doubled the dose of CBD  and kept the CBDa the same. The combination stopped the seizures cold. She hasn't had a seizure since. The side effect of the double dose is fatigue and weakness. I wondered, too, if Sophie wasn't even a tiny bit stoned. I don't like the weakness and fatigue, but I don't care about the high.  I asked Dr. Bonni whether I should reduce the dose, but she felt that I should keep her on it for another few days, so I did. I also reduced the Onfi again by another .5 ml. Here's the thing. The cannabis medicine interacts with Onfi and perhaps jacks up the level of Onfi, making her very tired and weak. We need to get her off the Onfi, though, and let the cannabis do the work. She was so tired over the weekend, that I decided to hold off on the cannabis medicine on Sunday night and all day Monday, even as I reduced the Onfi.

I did this with my guts and experience. I'm not sure how to tell you to do what I do other than to emphasize how powerful one's instincts are when you've been doing what I do for so many years. Trusting your instincts is always a good idea, and it's an especially good idea when you combine it with experience. Emotion doesn't play a very big part in any of this, to tell you the truth. It's working on the edges of nerves, if that makes sense, and I've gotten pretty good at it.

Sophie's now on a much bigger dose of cannabis and a much lower dose of Onfi. She's had nearly two weeks of being seizure free. I gave her a couple of days without cannabis to see if she might revive from the fatigue (she did) and added it back in today because it felt like the right thing to do. That's the intuition part, a very powerful nearly Shamanic feeling that I occasionally have and that I have learned to trust. It doesn't take a scientist to carefully figure out that since she's never seizure free on Onfi, especially at high doses, but seizure free on lower Onfi and higher cannabis, it's very likely that it's the cannabis doing the anti-epileptic work.

I'm going to continue weaning her from the Onfi and tinkering with the cannabis. Sophie's keeping me on my toes quite literally --



UPDATE: I edited a bit here because of some folks' questions about the products that Sophie is using. She has used a combination of Myriam's Hope or Canna-Kids, CW Everyday and THCa in various dosages for years. We have found that Sophie needs a bit of THC for better seizure control. Charlotte's Web has worked beautifully for Sophie, but it has a much higher CBD/THC ratio, so we supplement with products that have more THC. Right now, we're leaving it out of her daily regime, but that's probably only for a short time. It's important for readers to know that cannabis medicine is highly individualized and that what works for Sophie might not work for everyone. In addition to trusting my instincts, I trust consultation with my cannabis medicine doctor and the folks at Realm of Caring (who've guided many of us for many years). 

16 comments:

  1. I believe that you are so incredibly bound to her that you know things you don't know. Does that make sense? Your self that is so very tied to her senses what she needs and you are wise enough to trust that. And you are wise enough to trust Dr. Bonni Goldstein. Who must be very wise as well.
    Wise women, all of you, including Sophie.

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  2. Mother's intuition, the most powerful thing in the world.

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  3. You know best dear Elizabeth. So happy this routine is working.

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  4. So beautiful. I love that. You’re a HEALER. That’s how you know what to do.

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  5. You are quite amazing, Elizabeth.

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  6. I always tell young nurses to trust their gut. I'm so glad that Sophie is doing better. I need to tinker with Katie's cannabis too. She's doing well but agitated or sped up. I can't explain it but I know it.

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  7. Sometimes I have no good words but just want you to know I’m here, reading and loving.

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  8. What Ms Moon said. And also, kick ass with the info wean!

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    1. Oh dear lord. ONFI wean not info :) never ever wean the info!

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  9. Shamanic feeling and healing can clearly be trusted. Sophie's strong spirit shines in your photo.

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  10. That's a lovely picture of Sophie, she looks so present. I remember that you have said something before about you and Sophie being almost one, overlapping. It seems to me that your communication with her is so deep and clear, that it's more than intuition. You're a healer, Elizabeth, in every sense of the word.

    I'm wondering how much farther you have to go, in dosage, until you reach the end of the Onfi.

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  11. Working on the edge of Nerves, Yes... often you just have to. I'm so happy to hear that Sophie is doing better and that your Instincts along with the Guidance of a very good Doctor is working. Fearing the premature Death of one's Child is indeed a heavy, heavy weight upon the Emotions. Big Virtual Hugs.

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  12. I'm sure a lot of this is instinct on your part, and I (for one) completely trust that instinct. No one has more experience with Sophie and her reactions than you do!

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  13. Those maternal instincts guiding you through this this epilepsy tunnel sound incredibly honed And I always appreciate your updates re Sophie's drugs and their dosages. They help guide me in my trials and errors with C.

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  14. There is something so amazing about imagining you having that "shamanic" feeling that tells you how to best take care of Sophie. It must have been hard work to really trust it and not feel like you have to justify it to anyone else. You are a wonder and I love, love, love that you have a trusted cannabis doctor by your side during all of this. May you stop every once in a while and just really acknowledge what you're doing and what an impact it is. I hope you praise yourself every damn day. XOXO

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  15. You're a healer, Elizabeth, in every sense of the word.


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