Saturday, May 13, 2017

Mechanism of Action Unknown

Me, sitting on a stack of novels (my expertise), reading the insert to Sophie's Onfi (neurology's expertise)

So, I spoke with Karen, The Dark Overlord yesterday on the telephone to finish clearing things up regarding my recent conversation with The Neurologist. If you remember my post from several days ago, I was consulting with The Neurologist from Sophie's hospital room and asked her whether she might put her head together with Dr. Bonni Goldstein's regarding Sophie's care. I had -- erroneously, I guess -- thought that a consult between two MDs with separate expertise (one with Onfi and the other with cannabis) would be of benefit for their patient, Sophie. The Neurologist told me that she had received direct orders from her boss not to discuss medical cannabis and that she would, therefore, not speak with Dr. Goldstein. She wrapped things up by advising me to stop weaning Sophie from Onfi.

Post Marketing Experience

Later that day, when I'd recovered from the shock, I called the hospital where The Neurologist works to clarify this policy. I might have gone on a little rant with the nurse, but I used no curse words and was, in fact, as exceedingly polite as I've been taught since girlhood.  The next day I received a call from Karen, the Dark Overlord who, I learned, was not The Boss, but rather an administrative RN. She has a sweet voice and was as accommodating, let's say, as an insurance company representative or a programmed robot. You know the type: We understand your frustration. We understand that you're upset. We are working under the highest of standards. Per medical cannabis, it goes like this: We need more studies. It's an alternative treatment. Anecdotal does not mean evidence. Best practices. 

Mechanism of Action

Yesterday's second conversation with Karen, the Dark Overlord, clarified that The Neurologist, basically, lied to me. There is no policy from a boss that says she can't discuss medical cannabis with Sophie's medical cannabis doctor. Apparently, she does not WANT to discuss medical cannabis with Sophie's medical cannabis doctor. I told Karen the Dark Overlord that I found this not just incredibly frustrating but astounding and unethical. Karen the Dark Overlord assured me that the department is nothing but ethical. I truly do wonder what's going on, because I find it hard to believe that this doctor, with whom I've shared my daughter for over four years, would lie to me. I like this doctor.

I told Karen, the Dark Overlord, that a person like me who has been dealing with intractable epilepsy for more than 22 years doesn't really, essentially, care what the neurology community thinks about medical cannabis at this point as far as what I'm going to do with my daughter, but that hope never dies and that I still have hope that there will be some curiosity on the part of Sophie's specific health practitioners to learn why this medicine has helped her more dramatically than anything else she's taken for those 22 years. I also told her that I imagined a scientist would demonstrate some curiosity, specifically, toward Sophie's case. I also told Karen the Dark Overlord that I do care about younger families, and that families with children who have intractable epilepsy who are new on the path of discovery that multiple drugs are not helping but actually harming their babies and children will still be trusting enough to consult their doctors about medical cannabis. I believe fervently because of all the work (paid and unpaid) I've done with national organizations to improve the quality of life and medical care for children who suffer from refractory epilepsy, that trust between doctors and patients is paramount and that communication must be transparent and ongoing. I told Karen the Dark Overlord that that trust will be broken, that people will actually lie or fail to disclose that they are going to use medical cannabis (even though it's legal so far) when they realize their doctor has no interest or is being coerced to lie or influenced by pharmaceutical companies to lie or is -- let's be blunt -- intellectually lazy. Between this incident and the recent one where an esteemed pediatric neurologist who is being paid by a large pharmaceutical company doing studies on cannabis also tells his colleagues that it would behoove them to report their patients using medical cannabis to Child Protective Services, my trust is broken. Already shaken, my trust is irrevocably broken.

Pediatric Use (Sophie put on benzo at five months)

I told Karen the Dark Overlord that there were plenty of studies confirming that medical cannabis is an effective treatment for intractable epilepsy and that it was being held to an unethical and unreasonable standard given the drugs that my child and hundreds of thousands of others have been subject to for decades. She told me that she worked with life and death situations in the intensive care unit and wasn't familiar with these issues. I told her that these were actually life and death issues. Evidently someone pushed her INCREDULOUS button because she had never heard that.

Here's a very recent study, titled Efficacy of Cannabidiol in Children with Intractable Epilepsy from the esteemed journal Neurology. There are, literally, thousands of studies about the effects of medical cannabis on epilepsy that go back at least thirty years. What is going on here is harm.

The neurology community is doing harm.


  1. I am in complete Agreement... similar studies show that Medicinal MJ also help with such things as Serious Mental Illness, Dementia, Traumatic Brain Injury and PTSD... however, the Medical Community in general disregards it all in favor of harmful drugs pushed by Pharmaceutical Companies for great financial gain... many of these far more Addictive and destructive to overall Health and Well Being than MJ ever could be! I Lost Trust a very long time ago... weaning my Grandson from the harmful Psyche Drugs that were causing his body to shut down after so many years of use was brutal, the Withdrawal was agonizing but necessary lest they kill him. We have been advised not to consider Medicinal MJ for SMI Management and Stabilization until he's an Adult... since he is now almost 17 we feel we can wait it out and Pray that his Mental Stability holds sans any Medication... so each day is thus a New Adventure with a Teen suffering from Serious Mental Illness. Big Virtual Hugs to you and Sophie... your Advocacy is Priceless for the Community you are Serving so valiantly... Dawn... The Bohemian

  2. Oh god. Now they're just flat-out lying to you. Why would we be surprised?
    I can't even begin to take all of this in.

  3. This is not surprising to me. I have had side effects from statin meds and diabetes meds. I told the doctors about the problems and they acted like I was nuts. Of course these side effects were mild compared to what Sophie has been through, but it is ridiculous the way doctors ignore side effects, and don't want to discuss them. I knew my symptoms were not imagined, and I stopped taking the meds in most cases, and changed doctors. Every single time, within a short time of stopping the medicines that had given me problems, the FDA would come out with warnings, about the issues I had experienced, and often there were even side effects with the same medicines that were worse than what I experienced. It seems that Doctors don't report medication side effects to the FDA, or anyone else from what it seems like to me. Apparently, that is the human guinea pig's job.

    I think that it is horrible that there is a doctor threatening to contact the child protective authorities if parents want to use a medication which that particular doctor doesn't agree with.

  4. Love our favorite doctors honesty: "Drs think they are smarter than you." Except we're healing our kids and they aren't. Doh!! Turns out you actually DONT NEED SCIENCE to treat epilepsy. You need a plant and a mother and some basic human compassion.

    Proud to be in the fight with you. Perfectly stated.

  5. You have so much more intelligence about Sophie than the Neurologist. I ran into the same roadblock with my daughter. I hope you can find a neurologist who will work with you and Sophie.

  6. Onfi was developed by Lundbeck, a company in Denmark. Not the most stellar, ethical company around. They specialize in neuro/psych drugs. My son was prescribed Trintellex, an antidepressant made by Lundbeck. Another case of "we don't know why this works." After finishing the samples provided by the MD, he went to fill the script--only to learn that it would cost $500 a month because of course Anthem Blue Cross/California Covered would never cover such an expensive drug. Turns out Germany's health care doesn't allow Trintillex becauase they can't agree on the outrageous price. Jen in San Jose

  7. Wow! I admire you for your determination and fearlessness, especially seeing how it is driven by mother love.

  8. All medical research starts anecdotal, if not that, it's down to a hypothesis someone came up with. No evidence arrives fully baked. WTF is wrong with that doctor.

    I admire your calm strength, don't let anybody take this from you.

  9. Can you write a letter to the State Board filing a complaint about the lying and the refusal to consult another qualified practitioner about a legal treatment? Or lawyer up somehow?
    What would these even achieve?
    Or do you not want to burn this bridge? - S

  10. I think you are amazing women, strong, assertive and not afraid to stand up to the powers that be. I'm so glad you are Sophie's mama bear.

  11. Sophie in pink, just beautiful. The rest of it, the doctors, the lies, is pure evil. I don't even know why it shocks me. And yet it does.



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