Tuesday, April 29, 2014

The Face of Epilepsy with Cannabis:





First, I'd like you to go back and look at this post from November, 2013, nearly six months ago.

Did you go back or do I need to put that photo here, again? Let me know.

We visited Sophie's neurologist today at USC, and can I tell you that it was THE BEST neurology appointment I've ever been to in the nearly twenty years I've been going to neurology appointments? Let me say it again: today's appointment with The Neurologist was THE BEST neurology appointment I've ever been to in the nearly twenty years I've been going to neurology appointments.

Why? you ask.

The Neurologist is someone whom we really like and respect. When I told her that Sophie has been going weeks at a time without any seizures to speak of, she was astonished. Honestly, her jaw might have dropped. Sophie looked her in the eye and smiled throughout the appointment which made her jaw drop so far that I could see all the way down her esophagus into her lungs. I'm serious.

Reader, this appointment was not just The Best Neurology Appointment of the last two decades but maybe one of The Best Appointments In General of the last twenty years. At one point, I told The Neurologist that she should run up and down the hallway and shout and scream about her seizure-free with cannabis patient, Sophie. Right when I said that, she stood up and darted out the door. I'm serious. I almost expected to hear hooting and hollering, but what actually happened was she went looking for someone to tell and no one of significance was around (the person of significance, whose name will not be spoken here, was evidently one of those Neurologists Who Doubts Anything Unless It's Been Through The Proper Research, Including Double-Blind Placebo Controlled Trials). Oh, well. As one of my French dictations went: Tant pis pour elle.***

The rest of the appointment was me extolling the benefits we're seeing as Sophie goes longer and longer without significant seizure activity -- benefits for our entire family, not to mention Sophie's entire being. Then we talked about further reductions in the Onfi (the benzodiazepine that has been tested out the wazoo in double-blind placebo controlled studies for its efficacy in controlling seizures) and agreed that the slower we do it, the better. Withdrawal from benzos is an ugly, ugly matter, but we've managed to do two weans already, and The Neurologist was pleased to hear that the cannabis seems to be helping in that regard as well.

As they say in certain parts of the country, It don't get much better than that.













***Too bad for her.





28 comments:

  1. I read this, immediately went to Facebook, found the link there and shared it.
    I mean...I MEAN! Yes. It just DON'T get any better than this.

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  2. I did click over to see the old photo, and she's come a long way baby! I hope her doctor gets her chance to run through the halls and share the news. Fabulous news.

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  3. Wow. The photos say it all. I am so happy. Sweet Jo

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  4. thank you for that....joy....joy....joy...

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  5. Happy, happy, happy! I love this so much! I wish I could be a fly on the wall when that neurologist starts telling people about Sophie's experience. Man, I wish!

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  6. Terrific. When are they going to study cannabis for seizures?

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  7. I will run down the hall and shout for Sophie and for your family. Hurray!!!!!!!!

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  8. Was it the neurologist who was not around today who was unimpressed a few months ago? Sophie looks so present. I know you have had some increase in seizures ( and earthquakes) so am beyond delighted to hear this! Can't wait to see what more weaning will do.

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  9. So happy for you and especially for Sophie. Hope your neurologist sings from the hilltops. xo

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  10. Thrilling news! I would have loved to have been a fly on the wall during your appointment!

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  11. I looked at this photo before I knew what the post was about and got chills. And then I read that Sophie looked her in the eye and smiled. I am hooting and hollering! HOOTING AND HOLLERING!!

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  12. The relaxation is so evident in her entire countenance. A 'miracle', like so many children are experiencing on CBD/THC. A wonder to behold and a beautiful gift to have been bestowed on Sophie and her family.

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  13. YEAH, BABY! (That's me, hooting and hollering) I'm so dang grateful for this news, and for a neurologist who GETS IT. YOu are a valiant advocate and mother, and I am proud to know you. May it only get better and easier, better and easier.

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  14. Love seeing Sophie so present in these photos. GREAT NEWS!! x0 N2

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  15. This is how miracles happen, one patient, one family, at a time. I am so glad you and Sophie have someone who gets it, who can gauge the magnitude of this. The line for doubters, as a friend of mine says, forms to the rear. Even if it sounds corny, what I can think to say is bless you, bless you all. xo

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  16. As someone who is surviving stage 4 lung cancer because of cannabis I am so happy to hear that doctors are starting to help people. My doctor is not on board, but hopefully when they look at the data of my life they will see why I outlived both in length, but also in how much life I had. Sending all my love to you and your family.

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  17. Just so, so happy for you and your family. You make us weep with joy!

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  18. I went back. Wow. Truly mind-blowing difference. Like it or not, you are a crusader. The neurology world is going to get turned upside down, and the world will never ever be the same. Good on you.

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  19. I love that straight on look-you-in-the-eyes look that Sophie has had now for awhile. She's a walking advert for the power of CBD and a loving and determined mother. I can only imagine the thrill you must have felt when that woman "got it"... out of this world joy ! Well done, Elizabeth.

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  20. I am so grateful that she is not experiencing the pain and trauma she had to endure. All for a little weed that some people abuse, she is wired a little different and this connects the parts that needed some repair. Isn't this a huge step for medicine and a wonderful relief for those that suffer.

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  21. Right on! You have been absolutely dedicated, unconditionally loving, committed to Sophie's life, her comfort, her ability to be present. I LOVE these pictures of her--just LOVE them! Are you afraid of being hopeful? At what point does the fear lessen with something like this?

    But this isn't about fear. It's about your daughter's face, her eyes, her presence. Here she is! Hello, Sophie!

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  22. Oh, wonderful. For her and for you all. I hope that neurologist does shout from the rooftops!

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  23. Wishing I could throw my arms around you! So very happy to read this!

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  24. Oh, I remember that first photo so well. The transformation is amazing! I'm glad the doctor is paying attention!

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  25. OMG! Unbelievable. I am behind the times. I am so happy for Sophie and for you and angry that you had to fight so hard to get some kind of relief. xo

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