Monday, July 20, 2015

How We All Do It

M using her vaporizer system for MMJ while an inpatient

Back in April, my friend Heather connected me to her friend S, a Canadian mother of a sixteen year old with severe disabilities. Here's the email that S sent 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 Canada. I am very excited about this option and would appreciate ANY information you could offer.Thank youS

I responded immediately, but because I am Not A Doctor  and have only a tiny, little mother mind,™ God forbid I should give any medical advice. I referred her, instead, to Realm of Caring, to the Facebook groups and to my Canadian friends who use CBD with their families. I also suggested that she watch the CNN series Weed. 

A few days later, S responded:

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 Canadian stories. Gives me great hope. How do I join those groups?Thank you. S

I'm sure you heard my giant sigh when I read what her neurologist said. It was probably in direct proportion to how the neurology world perceives my tiny, little mother mind™ and the government views the evils of marijuana or Big Pharma anticipates profit, but I got back to S with what I knew about medical marijuana in Canada (that it's NOT illegal) and then referred her again to the Canadian mothers I know who are using it successfully. I'm not sure what happened next, but about a month later, I got this message from S:

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 advice.

On June 11th, S wrote this:

Day 35!!!!

Unfortunately, this past Friday, S informed me that M had to be admitted to the hospital because her feeding tube site got infected, and S had to then worry about giving the CBD oil in-hospital. Here's what she wrote me:

We are trying to get her medical marijuana approved to use here in Hospital!!!!! Yesterday a resident asked the team and they said yes. I was so excited until we went to use it. That resident never wrote orders for it!!!! So that's my mission today. She has gone 3 days without it. I will be devastated if she had a seizure because she was not allowed to use it!!!! I hope the oils get established and provided here!!! We are here because M's feeding tube site got infected. We brought her in Sunday and they did not believe she was sick! They were so rude and condescending. By Tuesday morning I had to rush her here in septic shock. They believed me that time. So looks like we are here for a while. Hope not too long!!! This place drives me crazy as I am sure you can relate!!!!

I can definitely relate, although my experiences in the hospital with Sophie were, thankfully, years and years ago. Knock wood three times right this second. S and M are far bigger rock stars than Sophie and I!

In any case, S updated me further:

I got the approval!!!! Can't believe they are going to let me do it in the Hospital!!! They say it is a first!! It seemed like a big deal. They had to take it into their possession and lock it up in their narcotic cupboard. Makes me laugh!!! I have enough Midazolem in my diaper bag to drop a horse but the less that 2% THC product that wouldn't affect a fly is confiscated!!!! Oh well, at least I got approval!!!!! I would love to see the look on the neurologists face if he hears about this!!!!!!

I know some of you think I dramatize stuff, that I might spend too much time writing about the negative experiences of our children with special healthcare needs and not enough time with the positive. I am perfectly aware that there are plenty of wonderful doctors and healthcare facilities all over the world, and I'm grateful for all of them. The reason why I highlight a lot of this stuff, though, is because it can be life or death -- literally and figuratively. It's a literal life and death situation for many of our children. Those of us who parent or care for children with severe disabilities and epilepsy in particular die a thousand deaths figuratively when our children seize. We are traumatized by the condition itself and then doubly or triply so when we face bad care or doctors who dismiss our concerns or who fight our decisions, openly, even as they have no hand to deal.

But back to our unfolding story. You're keeping up, right?

On Friday, S sent me this message:

Yes!! M got her medical marijuana tonight in the Hospital. Children's Hospital!! She is sound asleep and peaceful. It is such an amazing and wonderful medicine for her!! Natural healing power!!!

There's both the literal and the figurative saving of lives. 

I was so excited to hear this that I asked S whether I could post a story on the blog about them. This is what S said,

Absolutely!!!! If M's story could help one person or inspire someone that would be wonderful. I think this is an important time for this era of medical marijuana acceptance. It is definitely something that I believe in and has improved the quality of M's life beyond anything else that has been medically offered!!!

So, there you go. Reader, please share M's story.

We're all connected, and this is how we do it.


  1. Thank God for the love and perseverance in a parent's heart. I do not understand why so many docs fight against the best advocate a patient could have. As if we don't know our own children!

  2. Amazing. And you are changing and saving lives with your tiny little mother's mind. Don't ever forget that.

  3. When I was in Canada, I just took stuff in and gave Sophie whatever she needed without telling them. They aren't by the bedside often enough to notice. Bless S for her success!!

  4. The negatives you post are necessary! They give more people the courage to face down arrogant, condescending medical professionals, fight fiercer with insurance companies and educate ourselves about ALL options. You are a gem and thanks for sharing this remarkable story. I spoke with a neurologist yesterday who is the Principal Investigator on a proposed CBD study. The local DEA office specified the specific safe dimensions where it must be kept; then made a site visit to check it out. Then they forwarded a report to the DEA in DC which must approve---- a 6 month process!!! All for a plant derived medicine with no psychotropic effects. What a monumental waste of time and resources. All the while so many severely ill children and adults suffer. We need to keep talking, sharing, writing, screaming ---- whatever it takes!

  5. I like the phrase "real life accounts" used in this context. Not just as a sort of plain-spoken cousin to the somewhat fraught
    "anecdotal evidence", but as a framework for all the information a patient brings to any medical setting.

  6. Hysterically funny about them locking it up! But, in all, I think that was a very good way for it to happen. Now the evidence will be clear - in a medically supervised environment - that the effect of the CBD oil is real. At least that's what I hope they will see.

  7. YES!! The chills won't stop. #cannabisISmedicine

  8. It's wonderful that it's working so well and that the hospital allowed it.

  9. makes me feel like crying. so glad she found you.

  10. Shared. May you both continue to speak your truth. I'll keep trumpeting it to my connections.



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