Legislative Commentary. Sorry, Not My Usual Thing, But This Deserves an Exception

As promised in yesterday’s post about medical marijuana, and with permission, I’m posting the testimony of my friend Victoria Grancarich. This testimoney will be given before Minnesota lawmakers this September. Victoria’s circumstances are very different from mine, as her son’s place on the spectrum is far from Martin’s. But this epidemic is all one spectrum. We stand in solidarity with each other, and root for what helps any child.

Victoria’s 14-year-old so, Julian, is profoundly affected by autism. Victoria and her husband, John, have truly scoured the ends of the Earth to help Julian and have made progress healing his mind and body. Nevertheless, several years Julian threw himself from a balcony, breaking his back and both his legs. With the onset of puberty, Julian’s self-injurious behavior escalated to the point that he needed constant restraints and protective gear to avoid beating himself into concussions. Victoria and John believe medical cannabis saved their son’s life. As a friend and observer, I agree. In my opinion, to deny marijuana to Julian would be abuse. Yet, this medication was available under Minnesota law only because Julian also suffers from seizures; if he suffered from self-injurious autism but not seizures, the marijuana option would be unavailable. Victoria offers her testimony in an effort to have the law changed and make medical cannabis available to all Minnesotans in need.

My name is Victoria Grancarich. I’m the mother of a 14-year-old boy named Julian. Julian has severe Autism and a seizure disorder. Julian began having seizures in June of 2011. We have tried many medications over the last six years; however, seizures and motor tics continued to be an issue.

Julian had always been a kind and affectionate boy in his younger years. When Julian turned 13, the onset of puberty brought new challenges. In February of 2016 Julian became extremely violent toward both family and school staff. He began raging daily and would physically attack us. It got to the point where we as his family needed to wear protective clothing to avoid being bitten, having our hair pulled, and being kicked and punched. His younger sister could not be in the same room, and she had to spend all of her time at home locked in her room for her own protection.

In August 2016, Julian began to turn the violence on to himself. He began punching himself in the head full force thousands of times per day. He would use his knee to injure his teeth. He would bang his head into walls. We were powerless to stop him. We were trying to protect him using helmets and arm immobilizers, and at times we had to physically restrain him for hours at a time to keep him from harming himself. We believed our son was in terrible pain and was suffering from debilitating headaches. We saw this once vibrant boy lose his will to live. He seemed determined to end his life and came close several times. Between October 2016 and January 2017, Julian was hospitalized three times. He suffered self-inflicted skull fractures and massive tissue damage. He had black eyes and giant hematomas on his skull regularly. The hospital staff offered psychiatric medications as well as gabapentin but nothing could stop the daily rages that lasted every moment that he was awake. I felt certain that if we could not get Julian cannabis that he would find a way to end his life.

Julian qualified for cannabis through the state program because of his seizure disorder. After being sent home from Children’s Hospital in Minneapolis after another life threatening episode of self-injury with no plan in place to heal our son, we felt cannabis was our only hope. The excruciating pain our son was in was getting worse and we knew no pharmaceutical medication could help him. We had tried everything the doctors offered and had absolutely no success.

We enrolled him in the Minnesota Cannabis program in January 2017. Within a week of beginning cannabis therapy Julian was able to go about an hour without harming himself. As the weeks went on and we reached a therapeutic dose Julian’s behaviors began to slowly melt away. By early March he was smiling again. Within six weeks of beginning cannabis Julian was no longer injuring himself or others. He began to take an interest in his life again. He returned to school full time. We were able to remove his helmets and protective gear. By mid-March we were getting smiles and hugs. Julian began to go outdoors again by mid-April. By May Julian began to show interest in using augmentative communication for the first time in his life.

It is now late June. We have not seen one episode of self-injury since early March. Julian has not struck me since February. Julian is enrolled in a day camp for children with special needs where he spends eight hours a day. He is exploring outside and making friends. He is happy and smiling. Julian and his sister have a relationship once again. Julian spends hours in our back yard enjoying bouncing on his trampoline, moving his body and taking in fresh air. He lives safely and happily in our home. He is free from pain. His seizures and motor tics are well managed to the point they are not interfering in his daily life.

Cannabis gave us our beautiful son back. Julian Grancarich is alive and well today because of this miracle medication.

I Didn’t Wait for a Prescription When I Was a Teenager, So What Makes Me Concerned Now?

Happy Fourth of July! I’m going to spare you another painful post about school and bullying, at least for today.

You’re welcome.

Instead, let’s talk about cannabis. Medical marijuana.

According to governing.com, “[t]wenty-six states and the District of Columbia currently have laws broadly legalizing marijuana in some form,” and once the measures that recently passed in Arkansas, Florida, and North Dakota take effect, the total will be 29 states. “Some medical marijuana laws are broader than others, with types of medical conditions that allow for treatment varying from state to state.” Additional states (Alabama and Mississippi, for example) have passed laws allowing for marijuana possession in the narrow circumstance of an enumerated rare illness.

Recreational marijuana is legal in eight states. That’s not the topic of this post.

Medical marijuana is approved to treat “autism”—or at least some symptoms thereof, in a physician’s discretion—in only five states and the District of Columbia.

I’ll jump in here to say that medical marijuana should be approved in every state to treat (at least) profound autism, as at least one high-profile case in Texas demonstrates. On a personal note, make sure to tune to this blog tomorrow, for my friend Victoria’s testimony before the Minnesota legislature on what medical cannabis has done for her son, Julian.

In my State, New York, eligibility for medical marijuana rests upon diagnosis with “one or more of the following severe debilitating or life[-]threatening conditions: cancer, HIV infection or AIDS, amyotrophic lateral sclerosis (ALS), Parkinson’s disease, multiple sclerosis, spinal cord injury with spasticity, epilepsy, inflammatory bowel disease, neuropathy, Huntington’s disease[,] or chronic pain (as defined by 10 NYCRR § 1004.2(a)(8)(xi)). The severe debilitating or life[-]threatening condition must also be accompanied by one or more of the following associated or complicating conditions: cachexia or wasting syndrome, severe or chronic pain, severe nausea, seizures, or severe or persistent muscle spasms.”

I love the drafting! “[C]hronic pain . . . must also be accompanied by . . . severe or chronic pain,” and “spinal cord injury with spasticity . . . must also be accompanied by . . . severe or persistent muscle spasms.”

For almost a year, I’ve been carrying (but not using) a prescription for medical marijuana for Martin. The prescription was written by Martin’s New York autism physician, not by his California doctor. (And don’t confuse the New York autism physician with Martin’s regular pediatrician. We have a whole medical team.) The prescription is based upon Martin’s irritable bowel disease, which is a qualifying condition, along with the complicating condition of chronic pain. So Martin qualifies for medical marijuana in New York, no doubt. At the time the doctor wrote that prescription, he suggested that medical marijuana could also help Martin with sleeping, attention, and anxiety. Martin was having trouble sleeping again during that particular stretch, an issue that resolved on its own during the intervening months. His attention also has improved this year. His anxiety—well, keep reading.

When, several months ago, I mentioned the prescription to Martin’s California doctor, whom I consider his “primary” doctor for autism recovery, she balked, albeit gently. Martin neither suffers from seizures nor engages in self-injurious behavior, the two autism-related symptoms medical marijuana may help most. Without a clear-cut need, why not err on the side of safety, given the dearth of research available on how cannabis affects the developing brain? I investigated and found that she was correct about the lack of applicable studies. Most research about brain development focuses on recreational marijuana use (of high-THC product) by teenagers; my own search yielded almost nothing about the downsides of medical marijuana in childhood (and I know there must be downsides, regardless of dispute from advocates). With inadequate reassurances, and given that Martin’s sleep and attention are pretty strong these days, I tuck the prescription away again.

But lo! The anxiety. Martin’s anxiety level is so high. (Bad pun for a pot post? Let’s call his anxiety level “Everest-like” instead.) Martin seems to walk the Earth searching for reasons to lose his cool. Two weeks ago, we were Upstate, whence I hail, and Martin had the opportunity to play with same-age cousins he rarely sees. Martin was having a decent morning, acting sociable, until the moment his cousins arrived, whereupon he left reality and switched to talking nonsense (“There are vampires in New York! They are moving to the capital building, to live in the rotunda!”)—eliminating any hope for productive interaction with the cousins. It was plainly his anxiety, up to no good.

And the meltdowns. On the last day of school we invited friends and classmates (both challenged and typically developing) to a pool party. I grilled burgers, beef for the guests and boar for Martin. I had a variety of burger buns on hand for the kids’ diets and allergies. I had no bun for Martin’s burger, because he has never had, or requested, a bun. This time, he did request a bun, and became agitated when I wasn’t able to produce one for him. I wanted to avoid a meltdown, especially in front of the typical classmates, so I let Martin eat an Udi’s® Gluten Free Classic Hamburger Bun. (According to the listed ingredients, these rolls contain resistant corn starch, cultured corn syrup solids, maltodextrin. I never would have given one to Martin under ordinary circumstances.) About ten minutes later, Martin was screaming and clawing at his torso. He’d had some sort of allergic reaction, to something. I pulled off his swim shirt and saw his midsection covered in red welts, with bumps emerging before my eyes. I shoved a spoonful of dye-free Benadryl into his mouth a tried to calm him.

Too late. Martin had slid into his perseverative place, impenetrable by reason or consolation. Awash in tears, he struggled to speak. What brought him there was not, as you might expect, the allergy (terrifying as it had been for me). Instead, Martin had connected the rash with the burger bun and guessed that he would never again receive such a bun. I had no idea whether Martin was reacting to the Udi’s roll; it could as likely have been residue from the beef burgers, or given that he was affected almost exclusively from waist to chest, some contaminant on his swim shirt or something he’d got into around the pool. Martin, however, was not to be dissuaded: The bun was at fault, and now he was never going to get a bun again, never, ever, and Mommy? Can I have another bun? Can you go to the store right now? But never, ever, never again. I hustled the nonsense and tears and screaming into our kitchen, away from the gawking of Martin’s guests.

This is the kind of rigidity that Martin’s anxiety imposes: If I have not foreseen every contingency, including the possibility that he might demand a burger bun for the first time, we risk a setback. If Martin faces any new situation, like meeting cousins, anxiety consumes every social skill he’s developed.

It’s come to the point where I see anxiety hampering Martin’s recovery. His anxiety wrecks havoc with his peers, who respond by alienating him, which further exacerbates the anxiety. The same spiral happens at home. I’m constantly on edge, for fear of provoking a meltdown, and I’m certain Martin perceives that tension, which then prevents him from relaxing. Who could regain health under such circumstances?

You might say I’m approaching desperation. I know that the long-term solution to anxiety is to alleviate its underlying cause, whatever that may be. (I suspect, with little basis other than mommy intuition, that it’s related to the heavy-metal burden we continue treating. Heavy metals can lead to brain inflammation. Cannabis can reduce brain inflammation. Martin’s California doctor thinks the cause is more likely babesia.) But I’m having trouble looking long-term. Martin needs help now.

I’ve been researching. (Remember, I don’t science well.) I’ve learned that the human body produces endocannabinoids, which act as neuromodulators for various cognitive and physical processes, including the regulation of anxiety-dependent behavior.

The cannabis flower secretes compounds known as cannabinoids. Examples include THC (tetrahydracannibinol), which is mostly responsible for marijuana’s psychoactive effects; CBN (cannabinol); CBG (cannabigerol); and CBD (cannabidiol). (Cannabis secretes dozens and dozens of distinct cannabinoids.) Cannabinoids mimic the effect of natural endocannabinoids in our system; they bind to receptor sites usually available to endocannabinoids. THC generally binds to receptors in the brain called CB-1 receptors, while other cannabinoids generally bind to receptors in cells of the immune system called CB-2 receptors. CB-1 receptors affect anxiety and arousal during novel situations. CB-2 receptors affect inflammatory response. Cannabis products can be manipulated to adjust the content of the cannabinoids to address specific concerns.

The endocannabinoid system has been implicated in behaviors associated with autism, such as emotional response, behavioral reactivity to context, and deficits in social interaction; “it can be hypothesized that alterations in this endogenous circuitry [of the endocannabinoid system] may contribute to the autistic phenotype.”

My research also piqued my interest in low-dose nicotine theory, which has shown some success in treating ADHD. That investigation is ongoing.

I’ve been making inquiries with trusted friends in the autism-recovery community. My friend N— noted that she has been administering CBD to her son to help with communication and rigidity, but to little or no effect. I have also given CBD oil to Martin, both the HempMeds® brand and the Plus CBD Oil™ brand (because no THC is present, CBD oil does not usually require a prescription), and have seen nothing from the CBD alone. N— noted that according to the latest research she’s seen, alleviating most autism symptoms requires at least some THC to be present. I think that is correct, and the alternative we are considering currently is using a prescription that would contain some amount of THC: low THC and high CBD.

My friend D—, whose son suffers from both autism and epilepsy along with other medical complications, stressed the importance of careful observation and moving quickly to adjust the cannabinoid ratio (e.g., THC:CBD:CNG) in the hemp product when necessary. D— raved about the difference medical marijuana has made for her son, who has progressed from as many as a dozen major seizures per day to only a few seizures per week. On the other hand, D— was distressed when the THC ratio in her son’s product was increased too much and the nine-year-old seemed “high” before developing a case of the munchies. They quickly reverted to a prior formula.

With my friend R—, I had a lengthy pros-and-cons conversation by text message. For me, the highlight was realizing this, late in the days-long exchange:

My text: “Talked with N—, talked a LOT with Adrian. I think we are going to give mm a shot. I really feel like the anxiety us starting to impede Martin’s recovery. But I’m agonizing over this one. So scared of the effects on cognitive development.”

R—’s text: “I think if you give it a shot for a trial, maybe couple weeks, you aren’t going to do much if any damage.”

My text: “My real worry is that it will work, and we’ll go long-term.”

See how that works? I mean that medical marijuana is intended to be a bridge measure, to alleviate Martin’s anxiety while we work on eliminating the causes of that anxiety. I’m worried that if the bridge measure is successful, we might make it a very long bridge indeed, the attendant consequences be damned.

Last week Martin and I visited his California doctor, and I raised the topic of medical marijuana again, this time more intensely, given Martin’s continuing trouble with anxiety and my own increased facility with the topic.

“You’re looking for my blessing?” Dr. C— asked.

“Not your blessing,” I responded. “This decision I actually think Adrian and I have to make, as parents. But I’d like confirmation that bridging with medical cannabis won’t interfere with any of your protocol for Martin.”

“It won’t.”

With that, the balance tipped. In September, as Martin enters third grade, if nothing has changed with his anxiety, we will likely test low-THC medical-grade cannabis, at least short-term. Having put so much time into research and finally reached a decision, I’d like to get started immediately. But I’m drafting this post from a plane to Nicaragua—I keep thinking I need to tell you about that!—and won’t return home until September. However the laws are evolving in the States, I’m not foolhardy enough to carry marijuana abroad, not in any form.

Ultimately, I know that medical marijuana will not heal Martin. My interest in its use is solely as a bridge measure, to boost the real recovery process.

Have I mentioned that Martin is currently obsessed with bridges?