Tuesday, May 26, 2015

Cannabis Connection

Portrait of a neurologist using electro-stimulation

I've got two things to say.


I've said it before, and I'll say it again. Physicians who are obstructing their patients' desires to try medical marijuana for their children with refractory epilepsy are legion, and their intentions and actions are unethical. I'd go so far as to say that in some instances, they are killing children. Not a week goes by that someone doesn't contact me with their own story of stymied efforts to help their child or with a direct appeal for advice or help. I've stopped saying bullshit like, I'm not a doctor, but. I generally tell our story and then encourage the person to figure out a way to try CBD in whatever way possible. I don't say or do anything illegal or unethical, but I don't mince words. I direct them to those who are in a position to educate. I am empathetic, always, because my road has been twenty years long, and I know from where they're coming.


The Internets are strange and wondrous and miraculous. I don't care what dire thing you imagine social media is doing to the universe. For those of us who have more important things to do than discuss what celebrities are wearing or whether or not Common Core testing is bullshit or how much praise is too much for your children, the internet, namely social media, connects us profoundly to one another and can even save lives.

Here's how it went a few weeks ago for me and a woman named Sally (her name has been changed for privacy reasons):

Eight years ago, Stephanie told me about Vicki.
Vicki told me about Jeneva.
Jeneva told me about Heather.
Heather told Sally about me.
Heather told me about Sally.
Sally contacted me.

Heather gave me your contact information because we are really struggling with our daughter's seizures right now. She is 16 and previously had been seizure free for 2 years!! Now we have been in status Epilepticus twice in a week that requires massive drugs to stop. It's a matter of time before she is intubated and takes her at least 4 days to recover from. I have heard so much about CBD oil and need to try this. Not sure what resistance I will encounter with her neurologist but want to arm myself with information. I was not even sure I could get it in xxxxx. I am very excited about this option and would appreciate ANY information you could offer.Thank you

I spoke with Sally:

I am sorry to hear about your daughter's struggles, and while my daughter does not have the type seizures that cause status, she has had uncontrolled ones since she was three months old (she's 20 now!). Sophie is currently on Vimpat, Onfi and CBD. We've been able to wean her from 1/2 of the Onfi, very very slowly and hope to get her off of it completely this year. Then we'll tackle the Vimpat. She has had a reduction in seizures of about 90% and has had some seizure free days and weeks for the first time in her life. I know that xxxx's rules are very different than ours and that you need a prescription for cannabis. I think, too, that the ratio of CBD to THC is higher as well, but I'm not certain. I suggest that you look into the Realm of Caring website, join it or register there as well as the Facebook pages. I have seen many comments and threads there from xxxx's, so you'd probably find some resources to help you. I can also put you in touch on FB with a woman who is treating her 37 year old daughter with Dravet Syndrome with CBD -- she lives in xx. You might also contact the woman on this blog (she remains anonymous). She is the mother of a teenaged girl with seizures who is using CBD as well. I'd add that when I read her blog and how the CBD is dispensed, amounts, dosages and ratios, I question it, but again, the rules/laws are different in xx. Finally, I have another blogger friend who lives in xx that is using CBD, I think, for her daughter (aged 23 or so) who has both seizures and autism.
Sally then wrote this:

Thank you! M is on Vimpat, lacosemide, clobazem(onfi), and now adding phenobarbital that she had an allergic reaction to 15 years ago. They hope she's outgrown it???!!! So many drugs, each one has its own side effects. Our neurologist today told me he will not support CBD oil because he has no proof it works and is not legal here!!!!! So frustrating. I still will pursue this because I have heard such overwhelming real life accounts of its benefit. I am not sure how to join the support groups. When I  click the links I get a page saying I do not have permission to enter the site. I am super excited to be able to hear xxx stories. Gives me great hope. How do I join those groups?Thank you.

I wrote her back with my support and encouragement.

A couple of weeks went by.

On Sunday Sally sent me an update:

Just wanted to give you an update! I took M to a Cannibus clinic against the neurologist and paediatrician!! They were not supportive - the opposite of that really. I begged my family doctor for the referral. She wanted to put M in the Hospice and pull all treatment. I begged for this saying then at least I know I have done everything. Well we started 17 days ago. We have not had one single seizure in 17 days!!!!!!!! So thank you from the bottom of my heart. Your help has given us another chance at life with M!!! She has had some significant brain injury due to the severity and frequency of the seizures. The only way we can move forward and heal is to get a rest from the seizures. We have that now. Hope it is onward and upward from now on!!! Thank you again for your help and advise.

I'm not a believer in the there's a reason for everything or even in an ordered Universe. I don't think there's a god who has some sort of plan and that the obstacles in our paths are put there for a purpose. I don't think Sophie is an angel who picked me for her mother or that I was given this particular burden because god knew I could handle it and just it and no more. If that's heretical to you, I won't apologize, and I have no problem with you believing otherwise unless you thrust those beliefs upon me. I believe, rather, in randomness and chaos and absurdity and maybe, just a bit, in entropy. I believe also in connection and love and hope. My connection to Stephanie and Vicki, to Jeneva and Heather, to Sally and so many like them is awesome in the truest sense of the word. I am awed by these connections. The universe is abundant, and I'm a tiny speck, a part of it only as it connects to you and you and you.


  1. Such an amazing, amazing story. Your words reach out into farther realms than you can imagine. "Realm of Caring" is truly a wonderful name for what the Stanley Brothers are doing.
    Can you imagine wanting to put a child in hospice rather than try a plant-based medicine? I am stunned by what I hear from you about the medical communities reaction to CBD and I swear- I thought my faith in that community was as low as it could go.
    But to balance that out- there is you. And your community. With your honesty and bravery you are doing amazing things. One child at a time.
    Be proud, Elizabeth. You have so much to be proud of.

  2. We'd rather let your child DIE than try cannabis? What the hell kind of thinking is that? What the holy hell happened to these doctors' thought processes that their tiny little doctors' brains would go down that path of reasoning. Sometimes it's very hard to read your beautifully well written blog because it just makes me so ANGRY.

  3. The Internets are strange and wondrous and miraculous — and so are people like you, who take the time to connect with strangers to share your experiences and give support.

  4. This is the real deal right here. Thank you, Elizabeth. For all of it.

  5. I am so, so proud of you. The work you are doing with Sophie, with these families is beyond important. It's a life line, literally , a LIFE line.

    This "little thing" IS growing, through so many peoples efforts and with parents especially like you doing the amazing work you are doing and bringing light and hope.... while! you raise all three of your little loves, make effort to earn money and show up for yourself as much as you can. The whole thing is ... well, you know what I'm trying to say.
    And that last paragraph, E, that's what I love about you soo much.

  6. The Internet has been an INCREDIBLE resource for people who previously believed themselves to be in any minority -- including dealing with illness or loneliness or isolation of any kind. I do have some significant concerns about the way technology changes us and our brains -- the subject of a book I'm reading now -- but I also think it's been an incredible boon. So, yeah, what an amazing story, and I'm so glad your experiences have helped someone else so profoundly!

  7. Awesome! You, CBD, neuros with an open mind, Realm. All of us actually who share our stories and want to make a difference and give other families the option we have chosen to try.

  8. I had a terrible thought that this woman's doc (who wanted to do hospice) might up and call CPS on her for trying cannabis. I sincerely hope not. I agree with Allison's outrage that a doctor would rather do hospice than try cannabis. What in the name of all that is holy goes on in the brain of someone who makes that choice? How do they come to that conclusion? On the positive side, though, I love the connections you've made and the advocacy you continue to perform. The world is changing, and it will continue to get better, despite the powers-that-be.

  9. I was just speaking to my own doctor yesterday about how for too long doctors have been held up on a pedestal. He agreed. For far too long they had all the answers. They had answers to the questions we didn't even know existed. That time is done. While an incredible help, they are now part of a process, the process of us getting well. We are empowered and a lot of doctors do not like it.

  10. Connection, such a powerful word isn't it?



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