Tuesday Evening Tiny Little Mother Mind™ Peach Pie and Miscellany

In case you're wondering, Sophie continues to enjoy her new community-based adult day program. Today, she and a group of other clients went to the California Science Center. They rode the train downtown, and evidently Sophie loved the ocean room. Of course.

I took this picture this morning. I love Sophie's hands. They are so delicate and fine. I wish that she could use them more.

This sign made me smile and roll my eyes. It's hard to believe what's happened in the last five years in the cannabis medicine world. That being said, I heard about a neurological/pharmaceutical conference recently where the Powers That Be spent a good amount of time denigrating the CBD oils that we've been using for so long. The usual Two-Faced Neuro was there, sort of my nemesis if I really gave a shit anymore, which I don't. He was doing his thing, and this tiny little mother mind™ was doing hers.

Surprise, surprise. I hate to be cynical, but these guy and lady docs are about as cliche as the older man who has an affair with a younger woman.

Recently, a newspaper article touting the benefits of Epidiolex, the new CBD-only single-molecule pharmaceutical approved for Lennox-Gastaut and Dravet Syndrome, quoted a physician who said something to the effect of the "artisan oils" being used were "impossible to test." I don't mince words. What a load of crap. If crap could be, it'd also be transparent -- so clear that Big Pharma and the stooges in the medical world are busy, busy, busy undermining everything that's been done. Telling lies. Propaganda.

Don't get me started.

I made a peach pie today. It's one of the monthly offerings in my gig as baker for Everyone Needs Cake,™ in this case, pie. I took the skins of the peaches, Reader, and honestly? It was like slipping off a silk nightgown.

I tossed them in sugar and whiskey and let them sit for a bit.

I cooked the juices that collected after they sat for a while, added some cornstarch and cooked that up. Then I rolled out the pie dough that I'd made earlier and dumped the peaches in. I made a lattice with the other disc of pie dough and then I froze the whole thing for a couple of hours.

Here's the finished product -- perhaps a tad too brown in places, but my God! Those naked, cooked peaches sure smell good!

Grace

Dear You,

I have neglected to thank you in any timely fashion but won't undercut my apology with any excuses or defenses. Had I not been so stunned by it, I would have thanked you for your gift months ago. A mutual friend emailed me one day in March to tell me that you wanted to pay for Sophie's cannabis medicine. My friend told me that you read this blog and that I had helped you and that you, in turn, wanted to help us. My friend told me that this is something that you do. I didn't know what to say, so I said nothing. My friend emailed me again and stressed how important this was to you, how customary. Sophie's medicine is expensive. It is expensive for most people. Some people move their entire lives to states where they can have access to cannabis oil. Some people can't afford the medicine at all. We could hardly afford it, but I felt there were people far more worthy than I to receive such a gift. Yet the stress and strain of paying for it was considerable. I struggled for weeks in conflict over whether to accept such generosity. I am a strong person with sharp edges, my softness worn thin by the years. I am proud. I can do it. I can't do it. I can do it.

Accepting help is curiously one of the most difficult challenges I've faced over the two decades of caring for Sophie, and it's something that many of us who do this caregiving find we have in common. I think it has something to do with the chaos of our lives, our need to find order and meaning, to perhaps assuage our guilt and stem our suffering when we can't fix our children or control, really, anything.  There is a grace to accepting grace, and while I have had numerous opportunities to do so in this grand world, I confess to feeling more resistance than yield.  I accepted your gift and thank you for it. Thank you with all my heart. Sophie thanks you with all her heart.

Not a week goes by that I am not asked by someone for help, for advice, for information or for comfort. Graced, I try to live with grace. I feel like the woman at the well, dipping buckets down to the deep and pulling them up, overflowing. I don't know who you are, but your generosity is the water and the water keeps coming up, in buckets overflowing, and it's sustaining all of us. Thank you.

Love,
Elizabeth

Cannabis Oil Questions Answered, No. 8

The early days, Sophie aged 5

Do you ever use straight THC as a rescue medication? Do you worry about her getting high?

Yes, I do. And no, I don't. In fact, just this morning I woke to the awful sound of Sophie seizing in her bed. The awful sound includes grunts and thrashing limbs, sometimes a scream. I dashed from my room to hers and was assailed, immediately, by the smell of seizure. A certain type of tonic-clonic seizure induces not just a pungent body odor but nearly slick-with-sweat palms and feet. I don't know what this is other than a response from the autonomic system, but it makes my heart sink because it often stays for days. I actually hate this state more than anything, other than the seizure itself. I have no idea why my reaction to it is so visceral, but I imagine it has to do with powerlessness. Sophie has been doing quite well with the new strain of cannabis. She's going many days and sometimes even more than a week with no big seizures. I also give her THC at night, but only a tiny amount. I'll leave a discussion of that for another post, but suffice it to say that THC is very necessary for most kids with seizures and is the reason why CBD-only laws are often counter-productive. Whole plant medicine, ya'll.

I've gotten off track, as usual.

The answer to the question is, again, YES. I give Sophie extra THC, straight, as a rescue medication and it works. This morning, after that first seizure she had another, and after that, when she was still in a post-ictal state which means there was a bit of jerking and weird posturing, I drew up a small amount of THC oil into a syringe, shot it into the side of her mouth and massaged her cheek. She had already stopped seizing, so I wasn't giving it to her in a status state, but do you know that the clamminess and body odor -- the things that would ordinarily persist for days after such a big seizure -- disappeared? Her palms were dry, no body odor and everything hunky-dory. No more seizures, either.

Put that in your pipe and smoke it.

As for worrying about her getting high, cue the Mrs. Braddock laugh.



















*My cousin Maria sent me the photo above along with the ones below. There's something so sweet and nostalgic about them. I hardly remember those days, but then -- I do.

Henry, 22 months old

Me and Henry, aged 22 months and my father's foot

How To Make Cannabis Oil

I've sent you to my friend Christy Shake's blog Calvin's Story numerous times. She's a beautiful mother of a beautiful boy with a severe seizure disorder. She's a magnificent writer. She also makes her own cannabis oil to treat her son. Yessirre, Bob. She also makes her own cannabis oil to treat her son. Today she posted how to do it -- how to make cannabis oil. I'm going to cut and paste the information below, but you can also go straight to her site here and look at the really great photographs that go along with the instructions and, of course, start reading the rest of her beautiful blog.

Those of you who've sent along the recent "findings" about cannabis oil and epilepsy, "announced" at the most recent meeting of The American Epilepsy Society should know that while I appreciate you thinking of me, I have to say that I feel a bit on the smug, I told you so side. The train left the station years ago for many of us, and while we welcome these positive reports -- well -- yawn.

Here you go:

easy as pie: how to make cannabis oil

If I were to vanish from the earth on any given day—get hit by a bus or by someone texting while driving, take a fall down the stairs, get into a car wreck—I think to myself, how might Calvin survive? It’s not an unwarranted worry of mine because, unlike typical children who could carry on with life after the death of a parent, without harm or peril to their physical selves, if I died, it would take a huge and focused effort for Michael to take over everything medically related to Calvin just to keep him alive and buffered from the specter of life-threatening seizures. He’d have to know Calvin’s every medicine, their doses and time of administration, know how to refill them and get prior authorizations from the insurance companies and know how to make Calvin’s cannabis oils.

So, in the interest of recording my methods in the simplest way for Michael (no, I'm not planning on keeling over anytime soon) and, too, for other parents out there considering making cannabis oils for their children, here’s the nitty-gritty of it all. It’s as easy as pie once you get over the initial intimidation of trying something new:

THCA cannabis oil:
This will give you some idea of what to expect, but I highly recommend you study the original recipe I use before you begin, which is in much more detail and downloadable from Epsilon Apothacaries. I've included several links so you can visualize and/or purchase some of the items you'll need, many of which you can buy at your local hardware or kitchen store.

1. Start with one ounce of high THC(A) cannabis flower, trimmed well, dried and cured. I use an indica dominant hybrid. Mainers, I get mine at Remedy dispensary in Auburn; they are awesome.
2. Grind the dried bud by hand (wearing thin plastic gloves if you like) or with an herb grinder over a sterile stainless steel bowl. Note: sterilizing instruments is easiest by steaming them, rather than boiling; I found this out the hard way.
3. Transfer the crushed bud to a large sterile mason jar, cover and freeze overnight and ...
4.  Pour 8 to 10 ounces of organic grain alcohol into a second sterile mason jar, cover and freeze overnight. I use cane alcohol from Alchemical Solutions but some folks use Everclear.
5.  The next day, pour the alcohol over the crushed bud and let sit, covered, in the dark for up to 30 minutes (some people recommend as short as 5 minutes), agitating the mixture several times by shaking or stirring.
6. Dump the soaked bud into a medium or large sterile stainless steel sieve placed over a sterile 4 cup glass measuring cup with spout, and press out as much liquid as possible using a sterile spatula, spoon or other tool. Discard or compost the strained plant matter. You can also have it tested to see how complete your extraction was.
7. Push a sterile 75 micron nylon mesh bag partway into a sterile mason jar. Pour the liquid from the measuring cup into the bag (which is partway inside the jar) to strain out further plant matter.
8. Cover the jar and freeze no less than 24 hours. This process is known as winterizing and will remove some of the chlorophyll.
9. Place a sterile 25 micron nylon pressing screen over another stainless mason jar and depress its center to catch the liquid. Secure it with a rubber band or string. Pour the "frozen" liquid into its center while keeping the jar in the freezer so as best to extract the frozen plant matter, which has settled to the bottom of the jar. This straining goes very slowly, so it will need to be done in stages. Keep both jars in the freezer while you wait for the liquid to pass through the screen. The screen will catch a light brownish silt and your liquid will be clear and likely green.
10. Pour the well-strained liquid into a sterile 9 x 13 flat-bottom glass baking pan and place in a darkened, light-tight room (I put mine in the basement, the windows covered to keep out the light).
11. Cover the pan with a rectangle air filter, secure it and place it near a fan positioned at a slight upward angle to aid in evaporation. Some people suggest sterilizing the fan and its blades.
12. After a day or two the alcohol evaporates off and you’re left with a thin layer of golden resin.
13. Procure a sensitive scale, such as a jeweler’s scale, to accurately weigh the resin to at least a tenth of a gram.
14. Place a small sterile glass jar on the scale, which should be set to grams. Make note of the jar’s weight in case something goes amiss or the scale turns off, then tare to zero.
15. Using a scraper and/or razor blades, scrape the resin from the pan into the jar while it sits on the zeroed scale. The resin will be black and tarry. (See tip below.) Make note of the total resin weight in grams.
16. Using a sterile 50ml glass measuring beaker for ease, add 30 mls of edible oil to each gram of the resin and agitate to dissolve over the course of hours/days. I use MCT oil, which is made from palm or coconuts, but I may be changing to a pure liquid coconut oil instead. Many people use olive, safflower or black seed oil. Keep the jar in a dark place, such as a cupboard, away from heat while it dissolves. I usually yield close to 4.5 gms of resin which, by adding 30 mls of oil to each gram, gives me about 140 mls of tincture lasting Calvin about two months at roughly 2 mls per day in divided doses. As of this post, Calvin weighs 57 lbs.
17. Transfer the oil to an amber bottle or bottles easiest to draw up each dose with a dropper or a syringe, depending upon the dose. I like these syringes which can be put in the dishwasher without the numbers washing off; choose white plungers so you can see and measure the oil easily. I use leftover Onfi bottles, which look something like this, their plastic bottle adapters made to accommodate various oral syringe sizes and can also be purchased online or gotten from your pharmacy. I label and date my batches, which are tested by the good folks at two local laboratories, Tested Labs and Proverde. 

To give you some idea of concentration, I start with flower that has about 18% THC. When all is said and done, using the recipe above, I get an oil that is between 21 - 26 mg THCA per ml with roughly 1 - 2 mg THC per ml.

CBD cannabis oil:
Procure dried, cured high CBD cannabis flower (I use a strain also from Remedy). The first step is to bake the bud in a mason jar (or two) with a slightly loose though well-thread lid at 240 degrees Fahrenheit for one hour, agitating every 15 minutes. Let cool to room temperature with the lid just finger tight. (In my opinion, this is the most straight forward way to decarboxylate your bud, but not necessarily the optimum method. I recommend researching and asking an expert, but it has worked fine for me.) Then, continue with the same steps as above, starting with step number 2, however ... 

In my experience, the high CBD strain yields less medicine, so I add 13 mls of oil to each gram of resin instead of 30 mls, and I come up with a concentration of around 43 mg CBD per ml and about 2 mg THC per ml. I continue to fiddle with the potency. You can test your resin before adding the oil to have better control over the final product, but the labs need a fair amount of resin, which is why I test the end product instead and adjust Calvin's dose accordingly.

For much more detailed and precise instructions, please refer to the original recipe, from Epsilon Apothecaries, which you can download. The entire process takes several days but less than a week. 

Tip: to coax the resin to dissolve more quickly into the oil, add 1 ml of oil to the alcohol mixture and shake well just prior to evaporating it in the pan. This will dilute your final resin some, but will make the scraping easier and the dissolving faster. Simply weigh 1 ml of oil so you know how much weight to subtract to get the net weight of pure resin. In my experience, 1 ml of MCT oil, for instance, weighs about 1 gm. For instance, if you add 1 gm of oil to the alcohol mixture and, after it evaporates, you are left with 6 gms of resin substance, subtract 1 gm to account for the oil and your total net resin weight is 5 gms. Make sense?

Disclaimer: I can't be sure you'll end up with what you want or with an oil that will help your child's seizures, but perhaps it's worth a try. Remember, keep things as sterile as possible throughout the process.

Best of luck!

Cannabis Oil Update And Another Regurgitation of Sophie's History For Emphasis*

photo by Lynn Johnson for National Geographic Magazine

My friend Ray Mirzabegian is featured in an article about medical marijuana in this month's National Geographic magazine. Ray is the man who has a young daughter with refractory epilepsy, who drove to Colorado several years ago when he heard about the the Stanley Brothers and their cannabis oil. He learned everything he could about the oil, grows and makes it for a hell of a lot of children and adults here in southern California through Realm of Caring California. He's also one of the nicest guys on the planet, and I don't know what I'd do without him.

Right now, we've gone back to the original California Charlotte's Web that Ray makes and have stopped using Charlotte's Web Hemp Oil. While CWHO "worked" moderately well for Sophie, we've been struggling to find the same degree of seizure control and have decided to go back to the product we used when all the really good stuff happened. Sophie is, of course, on a little more than half of the benzodiazepine that she was on a year and a half ago, and if you read anything about withdrawing benzos, you realize it's a horror show. I've read adults report that they can experience withdrawal symptoms months and months after they're off the drug completely. If it's hard for you to imagine how difficult the process is, imagine peeling back your scalp and bathing your brain in a powerful narcotic twice a day for eight years. That would be Sophie. I don't think we can properly assess cannabis oil's true effectiveness until she is off the benzo completely, and that might take us another six to eight months. Then we've got to work on Vimpat, another powerful drug that she's been on since October, 2008 when it was newly approved for use in epileptics over the age of 17. Do the math.

In the meantime, though, she has some stunningly good days and no really bad ones. We are quite tolerant of one seizure or so a day, especially since they're brief and she seems to recover rapidly. A bad day might be several seizures in a day with drooling and clamminess, but they're not happening more than once or twice a month. Did you know that we haven't used Diastat, the rectal Valium rescue med, since we began the oil? KNOCK THREE TIMES.

I went to a party on Saturday night for a friend of mine and found myself engaged in conversation with a couple of people about our experience with cannabis oil. I told one man, a physician, that Sophie had been on 22 drugs in her twenty years. He said, That's impossible! There aren't even 22 antiepileptic drugs! I began naming them and then called it a day when he conceded that he hadn't heard of several of them. When I got home later that night, I wrote them all down and sent them to my friend to forward on to him. Here's what the list looks like:

Sophie’s Drug History 1995-2015

ACTH

Prednisone

Nitrazepam

Carbamazepine

Depakote/Depakene

Phenobarbitol

Vigabatrim

Felbatol

Neurontin

Lamictal

Banzel

Klonopin

Ativan

Diastat

Keppra

Zonegran

Topamax

Trileptal

Frisium/Onfi

Vimpat

Micronor (progesterone to help mitigate the hormonal swings that exacerbate seizures)

IvIg (intravenous immunoglobulin, adminstered for ESES, 2010, 2013)

Ketogenic Diet (two six-month trials, 1995 and 1999)

What was interesting to me was when I checked on the drugs -- when they were approved for use by the FDA and for what age child. You know where this is going, right? Many of those drugs were brand-spanking new when we gave them to Sophie (like Vimpat, the one she's been on for seven years), several were only available through compassionate protocol or through pharmacies in England and Canada or Germany and many were approved only for use in children over twelve or seventeen, if at all. At no point was Sophie on one of these drugs at a time, but rather on multiple combinations -- a near constant titrating up and down and adding and subtracting for the first six or so years. I don't feel like listing the side effects of these drugs or even the reasons why we discontinued them. Think anorexia, thrush, extreme irritability, sleeplessness (for YEARS), severe sedation, dehydration, recurrent fevers, rashes, hallucinations, psychotic behavior, increased seizures, new seizure types, headaches, nausea, ataxia, excessive drooling, impacted stool, depression (yes, Sophie's neurologist diagnosed depression many years ago, so we discontinued the drug). Well, I guess I listed some of them. 

I don't remember when, but at some point I just plain refused to add a third drug to a regimen until one of the two she was on could be weaned. Not a week goes by that I don't hear of kids on three, four, five and up drugs, still seizing. What the hell? When Sophie was about twelve, I refused to try any more new drugs unless Jesus Christ offered them to me. I firmly believe that relying on Jesus was no more or less scientific than relying on the old dart board that the epilepsy docs used. No one reported me to Child Protective Services. Sweet Jesus -- he never showed up.

Did I mention that at no point was Sophie seizure-free or even better? Can I emphasize enough that despite these various combinations of drugs/poisons and the good intentions of several superb neurologists and scientists, no one really knew what the hell was going on in Sophie's brain other than that it was supremely dysfunctional? Did I mention that during these nineteen years (and continuing today), Sophie received Chinese herbal teas and acupuncture as well as regular appointments with an osteopath, homeopath and nutritionist? Did I mention, too, that after two rounds of vaccinations, even as her immune system was fully compromised by high-dosage steroids, she was never vaccinated again? I firmly believe that without these complementary therapies, the refusal of vaccinations and a diet rich in whole foods, she'd either be dead or far more compromised than she is today.

Without Ray and all the people who are working so diligently to research cannabis, Sophie would also still be seizing.

*Please humor my repeating this stuff over and over if you've read it, over and over. I still get new readers and emails weekly asking for information. Every now and then, I feel the urge to evangelize a bit. 

Dispatch from the Revolution: Cannabis Oil Update

I am tormented with an everlasting itch for things remote. I love to sail forbidden seas, land on barbarous coasts.

Captain Ahab, in Herman Melville's Moby Dick

Exultation is the Going

Exultation is the going
Of an inland soul to sea -
Past the houses - past the headlands -
Into deep Eternity!

Bred as we, among the mountains,
Can the sailor understand
The divine intoxication
Of the first league out from land?

Emily Dickinson

Yesterday, I scrolled through an article from Neurology Reviews that describes a "study" on 16 patients of cannabis oil. The study is brought to us by Novartis Pharmaceuticals and basically casts a pretty dubious light on the efficacy of cannabis. It will be one of several "studies" and papers about cannabis presented at this week's grand American Epilepsy Society annual meeting  I also read a Medscape abstract with the unfortunate title What's Hot at American Epilepsy Society 2014, the first topic deemed hot being research on epilepsy and marijuana. In the interest of decorum, I'm not going to make any obscene jokes about the use of the word hot to describe anything having to do with epilepsy, unless you're like me and envision a layer of Dante's hell that houses not the epileptic but, rather, the world of neurology in general, pharmaceutical companies and the business of epilepsy. But, I digress. 

Yesterday, I also watched a beautiful video called Wanderers, by Erik Wernquist that primarily shows us a glimpse of neighboring worlds and uses the deep and resonant words of the great Carl Sagan as an overlay. As I read the announcements of the Powers That Be in the World of Neurology, I felt only the tiniest frisson of umbrage -- the instinct to react, to respond, to feel anger and frustration. I read others' comments about this upcoming meeting, about the "studies," their own vocal irritation and anger as familiar to me as my body parts, my own particular scars and birthmarks. Yet, my own is faint and muffled, not because I am tired, exactly, but more because I have actually let it go, in spite of myself. The letting go is not some spiritual surrender to a higher power, nor is it a hands up, white flag flying admittance of defeat. It is, rather, to be blunt, more a fuck all of that, I don't care about their studies response. In gentler terms, I've accepted that I no longer feel the need for vindication outside of telling our story, telling it over and over again to whomever might hear and be inspired by it. 

Here's the story: I sometimes gamely but usually with a visceral loathing gave Sophie the 22 drugs in various combinations (that had not been tested or approved for use in children) over the first nineteen years of her life in an attempt to stop her seizures that occurred mutiple, sometimes hundreds of times a day. I also tried the ketogenic diet twice. Surgery was not an option, and I thank the universe for that. None of those drugs worked well, most caused terrible side effects and some made her seize in novel ways. The ketogenic diet, so efficacious to so many, turned Sophie into a panicked, pacing and starved beast and to this day triggers near-PTSD symptoms in me when I think about it. At the end of last year, when I had not exactly given up hope but had, rather, resigned myself to constant struggle and a total loss of faith and trust in the business of epilepsy, we gave Sophie cannabis oil, first a high ratio product that a kind man found for us, and then Charlotte's Web from Realm of Caring. Sophie's seizures stopped. They stopped for weeks at a time. Sophie began to smile, be more alert, sleep better and not wake to the nightmare rounds of myoclonic jerks that had gone on for up to an hour each morning when she woke up for years. She stopped having a tonic clonic seizure (grand mal for the uninitiated) every single night at dinner for years. Sophie is not seizure-free, but I can assertively say that her seizures have been reduced by upwards of 90%, without side effects. We are weaning her from the drugs that have not worked, yet still have a malicious hold on her. Those drugs cost me nearly $200 a month in co-payments, and over her lifetime have cost many tens of thousands of dollars, an amount split up and paid, after wrangling and grappling and fighting, by corporate thieves, government, and our family at a devastating emotional and financial cost. 

The cannabis costs me around $350 a month, not cheap but entirely worth it given that it works.

That's the story, Morning Glory. That's the tale, Nightingale.

The letting go doesn't mean that I've given up on helping others, on advocating in general for children and youth with special healthcare needs. It does mean that I can speak my mind as a sort of elder person on the sidelines and support the admirable and enthusiastic efforts of those younger than myself, whose children are younger and who have many, many years ahead of them instead of behind. It does mean that I can think to myself I don't give a flying fuck what pharmaceutical companies and researchers are up to, nor do I have any trust that they will work in our best interest. With rare exception, they historically never have done so. Some will take offense to not just the language but the attitude. Again, I don't give a flying foo foo. I'll fight with every ounce of energy I still have so that other children will have access to cannabis and to be able to try it, and I'll do so by telling our story as truth.

I know I couldn't have done this -- this nearly corporeal surrender -- when Sophie was a baby, then five years old, then six, then ten or maybe even twelve. I couldn't have let anything just go -- the vague, pinched stress, the dull ache of something not right. The years of anger, of battle. The nagging sense of absurdity -- is it part of my own individual character or of the system itself? Or both?

It feels a bit like I've wandered, finally, into some new world.