Wednesday, September 10, 2014

I'm not a doctor, but.

International medical guidelines recommend the use of benzodiazepines as treatment for anxiety disorders and transient insomnia, but caution that they are not meant for long-term use, and should not be taken steadily for more than three months. 

Melissa Healey, The Los Angeles Times
 September 9, 2014

This is not going to be a post where I attack the use of benzodiazepines, despite my belief that they are horrible drugs, perhaps helpful in some ways but whose drawbacks far outweigh benefits. During the last couple of days, there have been a plethora of articles about their drawbacks -- scary drawbacks -- particularly as they are often blithely prescribed to patients with not just severe epilepsy but also garden varieties of insomnia and anxiety.

This is going to be a post where I deride the position of some neurologists who are actively blocking some families' pursuit of high CBD oil to try to stop their children's refractory seizures. 

I've always hated the expression I'm not a doctor, BUT. I won't go into why I hate that expression, but I will state here that the only authority I have to "report" on the effects of benzodiazepines is the nineteen years of experience I have giving them to my daughter. At four months of age, approximately one month after she was diagnosed with infantile spasms and in the middle of unsuccessful high steroid treatments that were injected into her body, we were instructed to add nitrazepam to her regimen. Nitrazepam was only available through what's called compassionate protocol as it wasn't then approved for use by the FDA. We dutifully picked the drug up from the hospital, cut it into quarters with a pill cutter and crushed the infinitesimal piece to a powder that we dissolved in water in a baby spoon and placed in our baby's mouth. Nitrazepam helped somewhat to stifle the seizures, but it by no means stopped them completely. The side effects were drowsiness and irritability, as well as strange fevers that came and went. We added three more drugs to the regimen in the following six months and began a weaning process of the nitrazepam that landed up taking nearly two years. Sophie's seizures kept coming, and over the next ten years she'd be put on Klonopin which made her anorexic and didn't stop the seizures and then, finally, Onfi which we're in the process of weaning. At last count, we have tried 22 anti-epileptic, and none have been successful. I can honestly say that it might take years to get her off of Onfi alone, and given the six-plus years she's already been on it, I can't begin to imagine what the long-term effects of it have been, particularly when I read the articles that have been steadily coming out of late.

I've discussed ad nauseum (most recently in my mini-memoir) the moment when I knew Sophie's esteemed neurologist had no idea what was going on or how the combination of drugs she was on as a nine-month old baby were interacting. If I were Oprah, it would have been the What I know for sure moment and what I knew for sure was that the whole situation was fucked up. I'm going to use profanity there because it's entirely called for and there are no other descriptors in my mind for just how dire the situation was and continues to be for countless children with epilepsy. 

Now I'll get to the point of this post which wasn't to bash benzos but to bash those in the medical world who continue to obstruct families' pursuit of high CBD oil. I know of two instances in southern California alone where prominent neurologists have actually reported mothers I know to children's services for going against their doctor's wishes. There are countless anguished reports on social media of families butting up against their doctors regarding CBD oil despite those children being on multiple drug regimens with no relief of constant seizures. It's madness, and it makes me furious. I can't figure it out. I think about it all the time and wonder why? Is it ego? Is it hubris? Is it jealousy? Is it the way our doctors are trained? Is it our culture? Yes, I realize that "we need more studies," that research is necessary and that the traditional scientific method of testing is good practice, but what the hell?

Do you think giving my four month old baby a powerful benzodiazepine along with two other drugs was something done with confidence? Had the long-term effects of that particular combination been studied rigorously? Do you think the woman who called me the other day and told me that her kid was on five anti-epileptic drugs (three of which were only recently "approved" for use) and couldn't get her neurologist to cooperate with her wanting to try CBD is unreasonable? 

I think it's madness and is only furthering my latent animosity toward the medical world. I want to be a builder of bridges. I want to improve communication between patients and doctors. I want to help break down the disconnect, but I find it increasingly difficult to do any of these things. If I were in a more measured mood, I'd craft something more particular and to the point. Instead, I'll resort to bad language, to using the word clusterfuck, to wonder about Sophie's increased chances of Alzheimer's Disease now that she's been on mega-doses of benzos for most of her life, to wonder what that would exactly mean for a person like herself. I'm not a doctor, though. I'm a writer and a mother, and my weapons are language and love.


  1. This is powerful stuff, Elizabeth. And it belongs in your book. Thank God for your weapons and your skill and passion in using them!

  2. I don't get it either. Our neurologist poo-pooed the whole marijuana thing as "hype" and made "I knew a lot of guys on pot in college!" joke. That being said, 5mg of Clobozam (which is a benzo) that we recently added to her Valproic Acid regimen has basically stopped her daily Once I move the the US, I'm going for the medical marijuana ASAP, regardless.

  3. The combined weapons of language and love have changed human life for a long time. You are in a proud tradition. If I can ever do something to help, write someone, sign a petition, let me know.

  4. I am sorry and appalled that doctors are actually being obstructive about patients who are not getting sufficient relief from any medical protocol and want to try something else that appears promising. I do not blame them for not assisting in this regard, because of the consequences that are likely to occur if something dire happens and a doctor is involved in the use of something like weed that has not gone through the protocols that allow the medical profession to use the substance. People sue at the drop of a hat. So those with so much at stake if something does go wrong are not going to want to risk their livelihoods, their professions, their vocations until marijuana goes through the standard testing and is proclaimed something that can be prescribed with warnings as the benzodiazepines can be used, as dangerous as they are. Attorneys should be drawing up releases that can hold up in court and protect those doctors who want to suggest, facilitate, advocate the use of substances before they are cleared. That's nearly as important as getting marijuana legalized and the extracts produced to be made available to those who can get relief from this. This situation has been around for a long time where some things just cannot be recommended by doctors when it is known that in some cases, it can be useful. The problem with marijuana is that it is still illegal in most places, and no doctor wants to make the headlines as the one who sent a patient to use it, let alone have complications and problems after use.

    I hope that this provides long term relief for all that are having seizures and other conditions that have been showing abatement. It is mind boggling that it is taking so long for the medicinal effect to be recognized and for the law to permit them to be used. This has been known for many years and just not acted upon.

  5. If there is anything more powerful than love and language, I do not know what it is.
    Which makes you incredibly powerful.

  6. Horrible. The stats about how many people are killed a year by prescribed medication are awful - and yet, for so many people, it's the only answer, damage be damned.

    I'm so sorry for how bad it's been - it's an awful choice to have to make, and lack of confidence in doctors makes it all the more painful. Money, though... it's all about money. No one is going to be able to convince me otherwise.

    As always, I'll make this suggestion under the proviso that it's just a suggestion - but if you have any tolerance of the idea of homeopathy, you can detox things like drugs with it.

  7. Clusterfuck is about the best description for it. My girl is in this exact situation, 4 different meds, 2 types of benzos, and a horrified expression from her neurologist when we asked about cannabis oil. It's basically insane. :(

  8. I think it would be useful for those docs to be called out by name. If they stand by their decisions, fine,
    but other parents should be able to know in advance who they're dealing with.

  9. I think what put me over the edge on this issue was that nytimes editorial. You know the one I mean as you commented on it as did I. I thought that editorial bordered somewhere between ludicrous and evil and Sophie kept going through my mind the whole time I was reading it.

    Your Anonymous commenter.

  10. I LOVE your weapons. They are powerful and will make a difference Elizabeth. I feel fortunate that our epileptologist is in our corner on this CBD journey. I also feel enormous guilt as a nurse that in my fervent desire to stop the freakin seizures I gave my son Klonopin, Ativan and now ONFI. But I also recognize I can't go back. We must go forward--- all of us. Together. If a doctor can't/ won't support that--- CHANGE!

  11. Oh where to begin with this medical establishment hubris and arrogance. Thank god for you, Elizabeth, for you and other parents like you who are taking a stand. And I agree with A above - why not name names so that parents have the choice to avoid these people? Some might feel they are doing the right thing, but my bet is they're just mostly scared, and fear should not be running this debate. There's too much at stake.

  12. I remember reading Bran on Fire and becoming aware of how often a person's life can depend upon the open-mindedness of the doctor, his or her willingness to accept new things. I wish this battle didn't have to be fought, but the world is luckier to have you as an advocate. Your inner fire is so strong.

  13. Brain on Fire. Bran on Fire doesn't sound too easy to digest.

  14. There are days when I thank my lucky stars that at the last minute, I listened to my gut and didn't go to medical school. And then there are days when I wish I had, if only to see whether the strong indoctrination of young, malleable minds into the world of power and the notion that a patient is simply a lump of clay and not a living, breathing human is possible to combat. I suspect that some of the commenters who have said that the physicians are likely scared to approve things like CBD because they could be sued are correct. I also suspect that many doctors have to be so convinced of their own superior intelligence to stomach treating their patients every day that it is hard to admit when they don't know something. But most importantly, I suspect that it is the words and love of patient advocates like you that will eventually be the tipping point that turns the tide for so many others. It is all we have and we will use those tools until it makes a difference. Love.

  15. I suspect that Cath Young is onto something when she says that legal considerations stymie doctors who might otherwise have the courage to go out on a limb and try CBD.

    But, that being said -- clusterfuck. Yes.

    Your weapons are powerful! You wield them beautifully!

  16. I just found your blog and I am loving it. My daughter was recently diagnosed with Dravet Syndrome. Glad I found you!



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