Monday, March 30, 2015

Confession (with an unapologetic curse word embedded) and a Venn Diagram and Cannabis Update

I have one to make. The other day, as I prepared my presentation for the Epilepsy Summit CBD seminar, and even as I spoke, I had the tiniest hope that I would somehow be vindicated, that a line of neurologists, many of them familiar and most only teenagers when Sophie was diagnosed, would have each taken my hands, looked me in the eye and said something like this:

Thank you so much for telling your story so honestly and beautifully. Thank you, too, for helping us to learn more about epilepsy and cannabis. We are so sorry that we haven't helped your daughter and millions like her. We are so sorry that we've actually done so much harm to her and have continued to turn a deaf ear to your appeals for partnership. We are sorry that we haven't disclosed our unethical relationship to big pharmaceutical companies and how this has utterly influenced our outlook and judgement, as well as our hospitals' malpractice lawyers and our peers. We are sorry that we've prescribed dozens of little studied drugs in mysterious combinations and then had the nerve to put down your own studies about cannabis, demeaning you as "just a mother" and "unreliable" and "prone to the placebo effect." We are sorry that the treatment for infantile spasms is exactly the same as the one you embarked on twenty years ago with your daughter and has the same results which are abysmal, yet we continue to resist, openly, an option that might be better. You are right. We've fucked up. Most of all, though, we are in awe and thankful that you and legions of other parents of these children that we haven't helped have not been defeated by our obduracy. 

How hard are you laughing?

I've gone over and over this thing for a couple of days and really did some soul-searching, trying to unravel my own insecurities, hubris, faults, etc. I always come back to our story, though, and the twenty year tail I carry around with me.

There is no such thing as vindication, and if there's anything I've learned over the years, it's as difficult to shed those last vestiges of desire for it as there is to drum up the will to keep going.




Here are two Venn Diagrams that my friend Greg made for me to use in my presentation. I was hoping that someone would have asked me for a copy, but -- well -- you know how that went.




In case you're like me and can't confess to not quite understanding a Venn diagram, here's a verbal explanation:


  • Sophie has been alive for 7,226 days (as of this past weekend)
  • Of those 7,226 days alive, 4.1% or 271 of them have been seizure-free.
  • Of those 7,226 days alive, 454 of them have been on CBD. 6,772 of them were on pharmaceuticals alone.
  • Of those 7,226 days alive, 0% or 0 of them have been seizure-free while on pharmaceuticals 
  • All seizure free days have been while on CBD and none have been while on pharmaceuticals alone.

37 comments:

  1. I am simply astounded at the neurologists' indifference about this. If a drug company had come up with a medication that worked this well, it would be like the second coming of Christ to these guys.
    I just...WTF?
    What the fucking fuck?

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    1. Elizabeth, you are an excellent writer and an excellent parent. Congratulations on this success for Sophie!

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    2. where do you get your cbd oil from

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  2. Brilliant Venn diagram. Math is not my mother tongue, but I like how Venn diagrams show how things are related to each other, very visually, better than a thousand words.
    I hope those neurologists choked on their own cognitive dissonance and confirmation bias when they saw that diagram.

    I wish you *would* send that powerful summary paragraph you wrote at the top, to the person who organized and invited you to speak, as "feedback" on the event.

    I am pro evidence based medicine (inlcuding immunizations) but I am anti professional arrogance and anti discounting of lived experiences. This has existed in the field of medicine for just about ever (e.g. how many post-partum women in 19th century Austria continued to die from childbed infection because no one would believe Dr. Semmelweiss when he exhorted his fellow physicians to wash their hands and instruments, in between going from autopsies in the morning to deliveries in the afternoon; just one more 'anecdote').

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  3. One of the questions I had for the Surgeon General (that I wasn't allowed to ask) was why "anecdotal evidence" is so roundly rejected (generally with a side dish of eye-roll) when it is only ever anecdotal evidence that has led us to begin asking questions about the most terrible side effects of medications? What else is there, really? And where would these doctors and researchers be without the voices of those who are actually taking these medications? As for your hopes, I couldn't laugh at them because they were so similar to the ones I heard rattling around in my head as I did days worth of research before the event, and so I only got a stomach ache when I read that you wanted to hear the same things. We will probably never hear anything even remotely close to those kinds of apologies, but we do have each other. We know that what we do, this continued advocacy, is for our kids and our friends and others who don't have the platforms or the energy or the time or the education we have, and some days that is enough.

    I love the Venn diagram for its simplicity and the fact that it uses the researchers' own language to speak to them. I will post it far and wide in the hopes that it will touch someone else. Love.

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  4. It just makes such perfect sense. And I simply don't understand as a human they can just dismiss it so quickly....how can they not take off their neurologist hat for even a minute and say, huh...that's interesting, maybe we should look into it more.

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    1. Deana -- They certainly are doing so and are conducting tests of a synthetic version of CBD with GW Pharmaceuticals. They are stymied by the Schedule 1 classification, though. And for those who can obtain CBD legally, the party line is still extremely cautious and sometimes downright obstructive for no real reason that we can ascertain.

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  5. It feels like drowning when your facts are dismissed.

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    1. AnnDeO -- Good think most of us are formidably strong swimmers at this point!

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  6. Keep going. The truth will prevail.

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    1. Anonymous -- Hopefully, you're a neurologist.

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  7. And Sophie's story is not the ONLY story like this.
    Crap. I'm mad and sad for you and Sophie--and for all those who need CBD and are less likely to get it with so many doctors holding on to the standard point of view.

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    1. Denise Emanuel Clemen -- I know. But you know what, too? Most of us with kids like Sophie don't give a flying foo foo what they think.

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  8. I see that you've quoted me in your sidebar. I'm laughing and crying. Damn, I wish that had happened. Sending love, love love.

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  9. No, I'm not laughing. I'm actually very sad. Sad that those words were not spoken to them, sad that they couldn't have possibly understood them and sad that they are all mother's or father's or sister's or brother's or son's or daughter's and that they do not bring their humanity with them.
    If just one of them would have the courage to go against their peer's and express the their agreement with you, of which I am absolutely sure at least one does, the conversation would dramatically change. But they are like school chums, afraid to revealed what they know to be true because it would result in exclusion. The ultimate shame for someone as trapped in the virus of the corporate and or scientific mind that keeps them linked (imprisoned) to each other.

    The Venn was wonderful - elementary. But it makes them look stupid and exposed. Far too embarrassingly exposed for their herd mentally and greed. They are afraid, very, very afraid that despite all of their bombastic posturing a "simple" mother figured it out - it would collapse their house of cards.

    Sorry for that rant, but sometimes they are just too much to take. And I love you, as best as one can through this forum.

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    1. liv -- Thank you, as always, for your kind words! I love the analogy of school chums and of the "virus of the corporate and or scientific mind that keeps them linked (imprisoned) to each other."

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  10. No laughing here. I understand the hope. That group maybe doesn't have the balls/tits to say what they should. Don't have the sense to listen. But others do. We are listening and we say it.

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  11. Oh so glad you wrote this Elizabeth. I'm still new to the epilepsy world but even still its heartbreaking to not be heard. Just last week we had a nuero appointment and I could not wait to give him the results of the last three months since starting cannabis. I held out hope he would be amazed at our results down to only a couple of seizures a month. Instead he said that's great but I think we might need to add in Onfi. I've told him many times that would be my absolute last option ever. So frustrating. I once had a nuero actually say to me while telling us keppra was the better option, oh I love keppra, they sent me to Disneyland for a week. WTF!

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    1. Lindsay Rose -- I just posted about Onfi withdrawal syndrome. I can only say with the utmost sarcasm: "wonderful." And "Disneyland -- the happiest place on earth."

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  12. It's fucking frustrating. Doctors and nurses too, often don't listen. We forget who the experts are. Just this morning I had a patient teaching me about bias and dealing with patients. She was very kind but it stings because I know I do it too. Sigh.

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    1. lily cedar -- I imagine that you are the most extraordinary of health professionals. And even acknowledging your own biases is light years ahead of most physicians.

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  13. I didn't even notice the imbedded swear word in my first reading b/c it seemed so DAMN RIGHT to swear there. sigh. I too love the venn diagram (although I confess to loving them always - I like venn diagram logic puzzles too), and I agree with Liv, that it it makes them look "exposed". I find your arguments/writings/experiences so persuasive, that I had a hard time imagining that the seminar thingy could go so badly, and now I can't understand why they can't hear you the way I hear you.

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    1. Emily P. -- I still can't figure out why the party line is so very entrenched.

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  14. I suspect that this information is so dramatic that they simply don't believe it. Which is exactly the kind of dismissiveness you find so frustrating. Ms Moon is right -- if the pharmaceutical companies had come up with something this effective there would be headlines. As you have so often pointed out, scientists pride themselves on being dispassionate and objective, but the truth is scientists treat all the rest of us like we don't understand, we can't possibly have valid observations because they don't fall within the parameters of a study.

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    1. Steve Reed -- The thing that's so frustrating is that three-quarters of the drugs that they've given our children, even as infants, have never been studied over the long term or in children under the age of twelve -- not to mentionl the combinations that many of these kids are on.

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  15. Im not laughing. I'm weeping for you and Sophie and for the apology the medical cabal will never have the courage or decency to give you.

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  16. Just outrageous. I wish you would get the apology you are due.

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  17. Now that I've erased everything I have tried to write, I'll just go with the can't lose 'That sucks.'

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  18. Wow. We are truly the experts on our kids. Just keep on keepin on girl. You are incredible.

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  19. Well, I or one am sorry they haven't helped your daughter or millions like her. But I'm glad you have.

    Reminds me of one of the very few times I had to interact with a neurologist. Maggie was little and obviously very disabled. I told him she was cognitively intact. He said (with derision) And just how do you know that. I looked him right in the eye and said, "she laughs at my jokes. She must be intelligent." He made a note in the chart. Always wish I could have seen what he wrote. Perhaps "mother delusional" But of course I was right. She was wicked smaht.

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    1. Maggie World -- Big sigh. And thanks for reminding me of Maggie's hilarity. It's one of my most beloved memories -- those jokes she told and her excitement in the telling.

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  20. Amen to all the comments. I would only add that I send you much love for the fierce way you care for and about your child (and this issue). That fierceness radiates in all directions and though we can't always see the good we do, your voice makes a difference. It is voices like yours that change the world. Thank you for speaking for those that can't.

    Bless you. Bless you.

    ~Beth

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  21. As is often, I read your post and am left without absolutely any words. Know that you are read, and that your words stay with me through my days.

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  22. What is that quote from Anne of Green Gables? "All pioneers are considered to be afflicted with moonstruck madness." You just remember that.

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