Cannabis Connection

Portrait of a neurologist using electro-stimulation
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I've got two things to say.

1.

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.

2.

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.

Kerry Girl

This is Kerry, and barely a week ago, she died unexpectedly after surgery to correct a vicious infection. Kerry was three years old. Kerry's mother, Kristin, a woman whom I have never met, sent me the following email a few days ago, and I was quite suddenly yanked up and out of the abyss where I had been resting.

Hi there Elizabeth, I wanted to reach out to you for thanks.  Our three year old daughter, Kerry, passed away almost a week ago.  Her service was held just yesterday at our family's church.  Your extreme parenting video was shown to the 200+ people that attended. 
Kerry was diagnosed with infantile spasms shortly after her first birthday, and I so appreciated you and the rest of the bloggers I found that were able to put into words what I was and am are unable to express. During the service our pastor mentioned your "her eyes will sustain you" as a particular image that stood out to him.
i just wanted you to know that your video has reached so many people, and to thank you for putting into words what I have been feeling these past three years.
Thank you more than you will ever know,

Kristin 

Contrary to what some of you might think or even be feeling yourself, being yanked out of the abyss where I was resting was not, emphatically not, because I felt blessed, because my children were alive and not like little Kerry, gone far too soon. Kristin's astoundingly generous email to me and to you, the other parents that participated in the extreme parenting video, didn't separate me from her or my Sophie from her Kerry. I did not, for a moment, think Oh, thank God. Them, not me. Her, not her. Kristin's hand didn't reach into the abyss but was, I think, always there. I have been struggling to articulate this for days, this grace that descended in the form of an email from a stranger.

We are all connected. All the time. 

Since that email, I have exchanged many words with Kristin and learned a bit about her beautiful little girl Kerry. Kerry and her twin brother Matt were born early in Colorado to parents who had long awaited children. It was clear that Kerry had some congenital abnormalities, and soon after birth she had her first seizure and was later diagnosed with infantile spasms. While the seizures were quickly controlled with medication, Kerry had developmental disabilities and made slow progress, but her family provided her with all the necessary treatments and of course, love. Kristin wrote this:

Therapies continued, head control was getting stronger, more avocados being eaten, plans being made for preschool and we got braver when taking her places in her toddler wheelchair.  I did not handle the stares well, I must say.  Many "chin down, eyebrows up" looks from me to people who looked a little too long.  She also loved to sing...her songs were mostly drawn out vowels mixed with short consonants, but they were truly her.  She supplied the soundtrack for our days.  Scarves became her favorite texture, she would feel and stroke the fabric against her skin...finally found a use for my mothers satin pillowcases!  

Kerry died after surgery to correct a massive infection in her ear, and Kristin told me that she hopes that her little girl is not forgotten. Please help me to help Kristin know that Kerry will not be forgotten, that this little girl who loved avocados and scarves, who sang to her family and provided the soundtrack to their days, is connected to each of us. Please let Kristin know that we are connected, all the time.

Thank you, Kristin, for sharing your little Kerry with me and for allowing me to share her with others. I am so sorry, so saddened by your loss, by our loss. We are all connected. All the time.