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| Hilton Head, 2008 The "She in There, She Know" photo |
Here's yours truly:
If that doesn't show up, you can go Here to listen.
I have to tell you that it's probably best that I didn't get to engage in further discussion with the neurologist who was also on the call. With all due respect, I found her position -- well -- the usual. Ya'll know me. I'm still holding onto the hope that one of these neurologists is going to shed the gobbledy gook and kick up their heels in joy that something good has happened. I'm also a tad sad that the part where I talked about all of you extreme parents -- the real Tiger mothers and fathers -- was edited out. Basically, I noted that we're very, very tenacious and unafraid of obstacles -- that our lives dealing with the various systems of care have already been so burdensome that most of us, particularly the black-humored ones, sort of expect more bullshit and absurdity. Oh, I didn't use any profanity and no one was aware that I was standing on a surfboard dressed in a Mad Hatter Costume under which was a string bikini.
And here's the wonderful Jim Abrams' statement through his Charlie Foundation about Charlotte's Web:
For the record, here is The Charlie Foundation's position on marijuana derivatives for epilepsy treatment:
The Charlie Foundation was founded on the principle that the medical standard of care needs to be be a process of informed, joint decision making between a patient or caregiver, and his/her health care provider. We have the highest regard for the value and necessity of science. We have much less sympathy for the intervention of government in this process.
What's more, science doesn't always lead the way. Frequently there is a painstaking period while science takes a great deal of time to substantiate or rule out what may be fact. Many don't have the luxury of that time. That's when factors such as anecdotal evidence and risk/benefit ratio need to be considered without government interference. That's where it appears we are with CBD today.
If we had waited for a randomized controlled study to be published on the efficacy the ketogenic diet, Charlie would have been seventeen years, rather than 20 months old before he started the diet, and I don't know that we would still have him today.
What's more, to paraphrase "first do no harm": "To pretend that multiple drug treatments for children with difficult to control epilepsy are science and then argue against CBD is the cruelest of double standards."
Jim Abrahams, The Charlie Foundation
Thank you, Jim and thank you Madeline Brand for airing our story!
SO great to hear you so happy for your experience....not a fan of the doctor.
ReplyDeleteI was waiting for sparks to fly. I suppose it's good they didn't. Carry on the fight.
ReplyDeletebravo elizabeth. bravo.
ReplyDeleteYour voice... i've never heard it before as I only know you from this blog. Your voice couldn't sound angry if you tried... it was fantastic as though you were telling a story, or a fairty tale ( rather than what I know has been a nightmare). Glad they allowed you the last word... felt the commentary on the double blind placebo controlled study drugs side effects and the lack of side effects ( albeit the positive ones) was a compelling point to leave the audienc with...Loved listening to this.. and good to meet you, finally!
ReplyDeleteGreat job elizabeth. Smart, smooth, thoughtful, pointed. Perfect. You should be proud.
ReplyDeleteYou were rock solid and perfectly on point in this interview, Elizabeth. Thanks for once again being unafraid to speak the truth. x0 N2
ReplyDeleteWell done! You are so articulate and gracious (even when listening to a p.o.v. with which you disagree). Many people would choke in that scenario, so I am thankful that you are willing to speak out for those who cannot!
ReplyDeleteI am really excited by everything that is happening. Great job on KCRW. I would like to offer a couple talking points.
ReplyDeleteRegarding this new "miraculous" plant medicine: Vitamin C would also be miraculous if the federal government prohibited it, and everybody started getting scurvy. It is an essential dietary element.
Our bodies are hardwired to use cannabinoids. Cannabinoids are ALREADY installed in our bodies.
Our relationship to this plant is ancient and has taken eons to evolve. The reason it seems miraculous is because we have been brainwashed to believe it is foreign. It's like the amnesiac who is amazed that a dog recognizes him, without realizing that it's his own dog. The plant is staying true to its relationship to us. In essence, helping us to remember our whole selves.
Cheers,
Mark
Thank you for commenting, Mark Brems, and for your excellent points. I tried to go into a bit of the natural plant stuff during the interview, but it was so short and a lot was edited. I appreciate you educating the readers here, though, as we all have much to learn!
DeleteHaving had over 55 tonic clonic or grand mal, whichever term you prefer, seizures since 1996, knowing first-hand how devastating they are and projecting that agony on all these children with epilepsy always makes me cry, like when I listened to this Charlotte's Web interview. The pharmaceutical industrial complex, with its hold on our government and media, is in business to prevent cures it can't profit on. This makes the king-pins criminal, and yet our society still worships them and our medical industrial complex still lets them run medical schools, training Doctors to use their products. I have been seizure free for 1.5 years now, after having 3-5 seizures per year for 15 years. I've healed epilepsy (at least it looks and feels that way) by chelating heavy metals out of my body. Charlotte's Web would have made my life so much easier along the way, but alas, I was told to smoke bud, which causes seizures rather than cannabinoids which prevent them. The information on cannabinoids was so deeply hidden, I spent hours researching online to dig up bits and pieces, by renowned Doctors and researchers I might add, to finally put it all together. I would have had to make it by cooking leaf and stem into coconut oil, lost the recipe and couldn't seem to google-find it again (I think the link actually went dead), plus after the bud-caused seizures, I was too afraid to try hard to find it again, so I easily gave up. Now, I see that the information is coming to the surface, products are being created and with beautiful results. May the truth continue to rise and ultimately defeat the greedy misers, and all the labyrinths they build to elude the public and continue their diabolical control. Thank you so much for your activism and bravery!
ReplyDeleteThank you, nance Broderzen, for commenting here and for sharing your difficult story. I am grateful to all those who've come before us, who can help us to inform and educate the public, who can advocate for those with epilepsy, particularly those like my daughter who can't speak. I wish you continued seizure control and peace!
Deletethat photo of sophie! oh my goodness. her eyes convey so much. so beautiful.
ReplyDeleteI am just absolutely struck by that picture of Sophie.
ReplyDeleteYou have such a beautiful voice and I am continuously moved by this turn in your story, miracle or no.
ReplyDeleteI thought your description of the neuro as rather "usual" was kind - she seemed rather soulless. I suppose most of them do, to you.
After so many years of reading your blog, it was really nice to HEAR your voice for the first time. And not just for its tone and quality... it was nice to hear the way you strung everything together. The way you told a story, the way you rebutted an issue, the way you so calmly and eloquently made your case. It was a blend of intelligent scientist and compassionate mother that stirred both the head and the heart. You couldn't have BEEN more amazing. Great show! You were an incredible guest. It was like you had done it all your life. :)
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