Surfing Around With Admins, Internecine Wars, Opioids and Arthritis

Given that it's nearly 11:00 Pacific Time, and most of you are already in bed and might be reading this tomorrow morning, let's just surf around tonight.

First of all, did you know that the FDA recently approved the use of Oxycontin for patients aged 11 to 16? Unless you've been living under a rock, and that's perfectly acceptable given what's going on in this crazy old world, oxycontin is a long-release painkiller that acts upon the brain like heroin. Here's the statement, reported by NBC news:

Dr. Sharon Hertz, director of new anesthesia, analgesia and addiction products for the FDA, said studies by Purdue Pharma of Stamford, Connecticut, which manufactures the drug, "supported a new pediatric indication for OxyContin in patients 11 to 16 years old and provided prescribers with helpful information about the use of OxyContin in pediatric patients.

Cue Mrs. Braddock's laugh.


Well, you know where this is going, right? I'm not going to put down anyone who wants to alleviate the suffering of a child in pain, but reeeeeeeeely? Raaaaaaaaaaahly?

As you know, my tiny little mother mind™ has been working overtime with countless other minds, far greater than my own, trying to lobby and persuade The Powers That Be that the efficacy of Charlotte's Web, of cannabis, of medical marijuana, etc. is far stronger than anecdote and certainly not attributable to the placebo effect, that it's a plant that's been used for thousands of years, that there are studies -- oh you know what I'm saying.  But hey, what do we know? What do they know?

Yesterday, I visited a prominent orthopedist in Beverly Hills, a young and handsome doctor who probably replaces the knees, shoulders and various body parts of a plethora of celebrities given the location of his office. Last week I developed a bum knee overnight, was driven, quite literally, nearly to my knees one afternoon with a stabbing, horrific pain, a sort of grim reminder that yes, Elizabeth, you are turning 52 years old on August 27th and have taken for granted your solid southern Italian peasant ancestry and were over-confident that these strong genes were somehow going to protect you from the vagaries of age. To make a long story short, my right knee has a touch of The Arthritis, but not enough to warrant any sort of treatment, which given that it'd be one of those gigantic steroid shots that I understand work but that actually spark up the primitive part of my brain that recalls injecting high dosage ones into my daughter's baby legs two decades ago -- I declined. I did ask the good doctor, though, about cannabis and its anti-inflammatory effects and if he'd heard about any of that. He gave a short, impatient laugh, waxed on a bit about how the claims that it cures everything! couldn't be taken seriously and that there wasn't any research, yadda, yadda, yadda.

OK.

The weird thing is that this headline:

FDA Approves OxyContin for Children as Young as 11

(read the whole article here) just doesn't surprise many of us and turns our already cynical and tiny little mother minds™ into tiny, little obdurate bricks. Show me the studies -- double-blind, placebo controlled, long-term studies of children.

Let's catch another wave, shall we?

Back on the ranch -- the marijuana ranch, that is -- I got into a little sparring with the self-described admins of a group on Facebook called Pediatric Cannabis Therapy. These admins (and really, why do we have to shorten the word adminstrators to admins?) decided that discussions about Charlotte's Web Hemp Oil (CWHO) and the Realm of Caring (ROC) are no longer allowed. I wish I could quote the rest of the message that they posted, but that wouldn't be ethical for a closed Facebook group. Suffice it to say that it was riddled with not just grammatical errors (which, admittedly, drive this tiny, little mother mind™ batty) but vindictive statements and lies pitting advocates of CBD legislation against those who hope for whole plant legislation. First of all, these two groups need not be mutually exclusive, but according to Pediatric Cannabis Therapy's new rules, they are. The amount of work that Paige Figi, the Stanley Brothers, Heather Barnes Jackson and a virtual army of volunteers in nearly every single state in this country has done in a a very short amount of time -- to help sick children get access to medicine -- is nothing short of astounding and admirable. CBD-only laws are not perfect ones, and most of us believe that they are but tiny steps toward a larger awareness of this plant's many benefits. It's been more than 80 years since marijuana was basically forced underground for political and economic reasons, and during the last sixteen months, enormous progress has been made by pretty desperate women and men whose children's lives are at stake.That being said,  members of the Pediatric Cannabis Therapy group were warned not to discuss Charlotte's Web by name or they'd be asked to leave the group. Insults flew for a bit and while I dropped in here and there (you know, surfing the waves, trying to stay cool, look cool), I finally unjoined the group. The crazy talk has happened before, and I just can't be bothered with it anymore. While perhaps boring to those of you who have no interest in The Marijuana Wars, today I wanted to suggest that those of you who do have an interest should probably avoid the Pediatric Cannabis Therapy Group for anything but the lowest form of entertainment -- a sort of Monty Pythonesque Office of Arguments:



I will say that many hundreds of decent people exchange valuable information there in spite of those pesky admins destroying the synergy (another ridiculous 21st century word that they didn't use but that bugs me so much I thought I'd throw it in there with the dirty bathwater), so if you decide to stay in the group or choose to join the group, I advise you to steer clear of The Admin Who Is Not a Beach Boy or certainly don't talk directly about The Product That Cannot Be Named.





After that shredding, I'm prone out.

Cowabunga!

Cannabis Questions Answered

Is Sophie still taking the same amount of Charlotte's Web, and how much does she take? Is it working? Is it a miracle? Do you think marijuana should be legalized? 

I think I mentioned a while back that I don't like calling any treatment that's been around for thousands of years and whose efficacy was basically hidden from the public because of politics a miracle.  A miracle is defined as a surprising and welcome event that is not explicable by natural or scientific laws and is therefore considered to be the work of a divine agency. I guess you could say that a miracle is also a wonder or a marvel, but when people start ascribing it to the supernatural or say that God gave us the plant -- well -- forgive my squirminess. I'm not a believer in that way. I just don't buy that God made the plant available to Sophie and not to someone like her in -- let's say -- Georgia, because She wanted a bunch of politicians to be arguing over who gets it and who doesn't and then somehow see the light and further glorify Her name by agreeing it might be helpful to some kids but only some kids and not all kids and certainly not with any of that funny stuff in it. Yesterday, I heard the mother of the American Sniper wailing on the radio and praising God for meting out justice to the sick soul of the soldier that shot her son to death by giving him a sentence of life without parole. At risk of sounding heretical or even offending someone, I wondered from the safety of my sexy Mazda where I was listening to this woman praise her God, if God had approved of her son killing those 166 people over in that evidently godforsaken country and then thought better of it and placed her son in the path of the other soldier who righted that wrong and then determined that he'd need to go to jail for a while and think about that and --- where was I?

The miracle. The answer to the question.

Sophie is now taking less Charlotte's Web Hemp Oil (CWHO) than she was last year, a tiny amount, really, and is on close to 50% less benzo than she had been when we began weaning in June of last year. The ratio of cannabis to THC in CWHO is approximately 26:1, and we have found that the coconut oil base is easier on her stomach. It appears that for many people taking cannabis, a smaller amount is better. So unAmerican, right? We have not added any THCa, or THC, something that many of the kids with epilepsy are taking to help seizure control (and something that God has determined should not be available in many states because of its psychoactive properties), but at least for the moment have tweaked the dosage to about the right point and are happy with the results. We believe the lower amount of benzo is allowing the cannabis to do its work and hope that as we continue to wean the drug --- slowly, slowly, slowly -- she'll continue to do better and better. This is touchy stuff, folks, and it's difficult to figure out. I know of many people whose kids are doing very well with cannabis, and I know some people whose kids are not doing so well or who have even seen a worsening of their symptoms. I think the combination of multiple anti-epileptic drugs and the exquisitely unique brain chemistry of each person make determining whether cannabis will or can help to control seizures very complex, but I believe fervently that every person should have the opportunity to try it and tinker with it. I also believe in legalizing marijuana in all forms and rescheduling it. Pronto.




Sophie is good. She's really good!

She's good right now, and that's a marvel and a wonder for which I'm very, very grateful. The universe is abundant.

Cannabis Oil Questions Answered, #2

What would be the effects of this oil if you were to take it?

Sophie in motion

An anonymous commenter yesterday left the above question with the following statement:

 There was a story on our local news last night (Philly area) about a family who had moved to Colorado for their daughter (they are from NJ) and the mom said [she] dreaded "the first day she was a little stoned." I know you have stated that the concoction made is low in the psycho reactive properties and felt that this woman just put back any progress made to legalize this drug!

First I'll answer the question because it's an important one, and then I'll discuss the rest of the comment, because it's actually even more important.  I have tried Charlotte's Web -- a small amount, because it's liquid gold as far as I'm concerned, and I felt, literally, nothing. There are trace amounts of THC in the Charlotte's Web oil, and from my limited understanding of medical marijuana, I know that it's a whole plant product and that each component is essential for optimal benefit. This means that a small amount of THC, the psychoactive part of the plant, is necessary, but because it's only a trace, it's nearly impossible to get psychoactive effects unless you were to drink vast amounts of it.

That being said, there have been times when Sophie seems "stoned" or probably more descriptively, sedated,  after taking Charlotte's Web, particularly in the early days when she was on a much larger dose of Onfi, the benzodiazepine that we are currently weaning. Many people have noted that the combination of cannabis and the benzos can cause sedation -- too much sedation -- and many have observed and noted that the children who do best on Charlotte's Web are clean of benzos. This hasn't been the case for us, though. Sophie is still on a considerable amount of Onfi and has had a dramatic decrease in seizure activity (95%). We hope that as we continue to wean her from the Onfi and then the Vimpat, she will improve even more.

That being said -- and perhaps this post could be sub-titled That Being Said -- the oil needs to be shaken quite vigorously before it's drawn into the syringe and given. The mixture is oil-based -- things separate, it's darker, it's lighter, etc. When Sophie has appeared "stoned," I figure it's because she actually received a bit more THC in that dose than she might have if I'd shaken it better or it's from the bottom of the bottle and a tad more concentrated.

That being said, I am of the mindset that being a "little stoned" is not something that anyone should be concerned with as far as our children are concerned. Given the numbers of drugs that these kids have been on, the debilitating side effects, including dizziness, nausea, headache, sedation, agitation, depression, suicidal ideation -- the list goes on and on, not to mention THE SEIZURES -- being a little stoned might very well be a positive, if you get my drift. At the very least, it pales in comparison to the dangers of current anti-epileptic drugs that children and adults with refractory epilepsy have taken for much of their lives. As the mother of a child who has been on 22 drugs that have not helped her one iota but have, rather, caused her to feel, probably, like shit, for much of her life, I could care less if she feels a bit stoned every now and then.

That being said, I support the full legalization of marijuana, even for recreational use. I am not a pot smoker, have not, with the exception of that little bit of Charlotte's Web, smoked or ingested or otherwise partaken of marijuana in nearly thirty years. And thirty years ago, I never inhaled it, either.

That was a joke (the never inhaled it part).

That being said, I understand there's a real danger to going down the road of pure cannabis -- without THC. Keep thinking whole plant. Watch the videos I've posted about the plant. Educate yourself. I believe we owe the people on the front lines of legalizing marijuana, even for recreational use, enormous gratitude. They began this revolution, and I cringe when people say they don't support legalizing it. I feel like their reservations don't come from an educated position but are, rather, cultural and have no basis in science.

That being said, thank you for your question, Anonymous. It was an important one.