An Access Public Service Announcement

Did you notice while watching the Dateline special Growing Hope on Sunday night that nearly every single commercial was for a pharmaceutical or for a pharmaceutical for your dog? Are you at all as bothered by the irony as I? I doubt anyone who wants to be relieved of their incontinence problems, their aching joints or their failure to maintain an erection has to beg their legislator to get relief.


I'm drawing up a few days' worth of Sophie's Charlotte's Web cannabis oil in the above photo. I told Oliver to hold that camera a little higher so you can't see any chins. You can see my Italian peasant woman arms, though, that soft and terribly strong part of my body that I defy anyone to put down as they've served me well as a mother for over twenty years. As you can see, I'm at the end of the bottle which means I can pick up the telephone or go online and order some more from Realm of Caring.

I have access to this lifesaving medication.

Thousands of families don't, though, and are either medical refugees or waiting to get access, at the mercy of politicians. I won't talk about doctors in this post, though, at least the misguided ones. Some people not only live in states without access to cannabis oils but also have doctors who stymie their desire to try it.

Sigh.

You can help. Go to The Coalition for Access Now. 

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. 

When the Moment, Much Less the Day is Everything

I watched Sonjay Gupta's third segment of Weed the other night on CNN and was struck in particular by what the wife of a soldier being treated for PTSD said about the possible long-term risks of using medical marijuana. I'm paraphrasing here, but I remember her saying she had her husband back. She said that he had his life back. She mentioned that 22 soldiers commit suicide each day in this country. She stated that even if they were to find something negative about the use in five or ten years, they would have had life NOW. 

This living in the present moment thing is part of our popular culture, expressed in mindfulness meditation and in most conventional religions. We are urged to seize the moment, take each day as it comes, one day at a time and so forth. For those of us with children with special needs, particularly older ones who are and will remain utterly dependent upon us for the rest of their or our lives, this is something piercing and gets to the root of just how we cope. It's also an imperative when your child is at risk of sudden death or even an inevitable early death. Sophie, as you know, had been seizing hundreds of times a day for most of her nineteen years when we began using cannabis oil. She is nonverbal, needs assistance walking, is fed like a baby, wears diapers, has either her father or me sleep with her every night and has to have a padded bedroom so she doesn't hurt herself. When the seizures slowed down and then stopped for the most part, our family's life was so radically changed that we really didn't talk about it for a very long time. We still don't, really. I've thought about "long term effects" of using cannabis oil, and these thoughts are really no different than the ones I've had about the 22 pharmaceuticals she's been on as well. My fallback coping skill is a grim and dogged sense of humor, and there have been moments -- and minutes and hours and days and weeks and now one and a half years -- when I've wondered if Sophie was going to grow a Bob Marley-esque tumor in her brain. Please humor me and don't gasp too loudly. Like the wife of the soldier with PTSD, though, I believe that these largely seizure-free days and weeks and months and maybe even years, when Sophie is alert and sleeping well, when she doesn't do a face plant into her dinner every night or smash her head into the floor or the dresser in her room, are worth it.

That's what living in the moment is for someone like me.

My Italian grandmother, whom I've written of here quite often, was a deeply religious woman and also deeply suspicious. I don't know the expression but think there is one for someone who doesn't like to speak of anything positive because of the chance to jinx it. We're fiddling around with Sophie's cannabis oil, trying something new, and this morning for the first time in a very long time, she didn't have a seizure when she woke up. Rather than perpetuate superstition, I'm going to seize this moment and this day and exult in it.

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.