Where To Find Pediatric Cannabis Support

“Diane, please note: Mother gives 7-year-old male patient THC oil to treat his seizure disorder.” I’d never seen a doctor speak into a tape recorder before, but then I’d never seen this doctor. I fully expected Peggy Lipton to appear with her wide smile to offer me a damn fine cup of coffee and a slice of cherry pie. Trying not to roll my eyes, I corrected the new doctor who was covering for our regular pediatrician and just asked to examine a chronic cough. “I don’t give him THC. (Although I would if I needed to, I thought.) I give him a high CBD.” He actually did roll his eyes at my interruption and interrupted me. “A cannabidiol is a cannabidiol. Right? It’s the same,” he said nodding conclusively. “No it is not. Do not put that in his record,” I said firmly.

A few days later I realized how important correcting details like that can be when I watched a lecture on cannabis and infantile spasms given by Dr. Hussain from UCLA. He actually “behooved” an auditorium full of neurologists to remember they are mandated CPS reporters.* And then a few days later my friend Elizabeth tells me that her adult daughter’s neurologist lied to her to get out of consulting with Dr. Bonni Goldstein. And I just got off the phone with the parents of an infant recently diagnosed with Dravet’s Syndrome. They’ve already failed five medications but their neurologist said it wasn’t time yet, that cannabis is a last resort.

Meanwhile, I opened an e-mail today from a mom wanting a referral to a doctor “who really believes in this medicine.”

* * * *

California has had a medical marijuana program for over over 20 years. Five years ago our children became patients and turned up the pressure on the medical profession to actually participate. Yet the brilliant minds of our children’s physicians are still obnoxiously spreading embarrassing misinformation and fear-based lies about marijuana. Time has demonstrated that they remain largely uninterested in getting up to speed.

Speed isn’t a feature of their model. Science is method, and evidently that can take a while. And because the ways parents are using marijuana as medicine are law breaking and taboo transgressing, research holds extra significance in this case. In general, I just don’t think most U.S. doctors are going to make a helpful move without two things: research and a pharmaceutical grade product. Tragically, I think it would take a lot to convince most doctors that our “artisanal oils” cut the mustard, although I’m hoping peer reviewed research like this study from Dr. Bonni helps.

“Do you say, ‘Take two hits and call me in the morning?’ I have no idea,” Deepak D’Souza, a professor of psychiatry at Yale School of Medicine lamented to NPR last year. I think of him often with a sorry chuckle. Common sense would say, “duh, yes.” But science sense says, “NO!”

(“Smoking isn’t medicine,” I’ve heard many doctors warn. Because lungs are sacred, unlike bones, livers, pancreases and all the other organs damaged by pharmaceutical medications. Again with the common sense vs. science sense debate . . .)

* * * *

I’m thinking of my bold, genius friend who has 2 out of 3 kids on the autism spectrum. They all use all the artisanal oils, from CBD to THCA to THC. Based on their individual symptoms and responses to each of these products, she’s completely customized her kid’s treatment plans to set them up for the most successful days possible. And it’s working. (I hope to interview her soon!)

I’m not trying to be negative or stereotypical, but instead observational. From where I sit, I just don’t see many doctors being able or willing to create this type of treatment plan anytime soon. Meanwhile, as we continue to wait for their one version of CBD, I can’t help but wonder which diseases will even have access to the prescription. And then how long will it take to get a pharmaceutical grade THCA or THC approved for pediatric use? So, you can go to a doctor I guess . . .

* * * *

Years ago, my wise Buddhist therapist reminded me, “It’s not correct to expect someone to be other than they are, and then hold that expectation against them.” I’m also thinking about that Narcotics Anonymous saying, “Insanity is repeating the same mistakes and expecting different results.”

For my own sanity, I’m working hard on accepting the medical profession for just what they do offer, and adjusting what’s realistic to expect.

Doctors follow science sense. Mothers follow all their senses. Each have their place, but one is more inclusive than the other. Since science sense doesn’t make any sense to a lot of our kids’ diseases, it only makes common sense to acknowledge the limitations of the medical model and look elsewhere.

While I think it’s absolutely reasonable for a parent to want to go to their child’s doctor about using marijuana, I don’t think getting solid support from them at this time is a realistic expectation at all. It’s not who they are. Marijuana is simply outside their scope.

* * * *

This leaves a huge gap in services. While the medical marijuana industry has gratefully made huge strides increasing our children’s access to safe medicine, the support parents need to use these products is lagging dangerously behind.

Who fills this gap? Where do you go for pediatric cannabis support? This is one of the most frequently asked questions I get. And as irritated and irate as I am with the rest of you that the medical profession remains rigidly obtuse when it comes to applying common sense, I’m trying to pull on my professional training and remain solution focused. I’m tired of the us vs. them paradigm. The pediatric cannabis community needs our own complementary support system and since there are minimal supports for us, we are in a unique position to be able to create the kind we want. So when people ask me where to find pediatric cannabis support, this is where I take it:

1.) Go directly to the wisdom holders.
In the case of pediatric cannabis, the ones in the know are clearly parents. We started this and have actual ground level experience. The major product lines were created by and are ran by the parents and friends of pediatric patients at the forefront. Often these companies provide some form of support, including Facebook groups, online educational tools, and customer service hotlines. You can find them on this resource page. We can educate you quickly so you don’t waste a lot of your resources getting up to speed. We can build your confidence and empower you. But if this way isn’t for you, Epidiolex is coming at some point and you can see if that works - it does for many! If it doesn’t quite do what you’re hoping for, don’t worry, our parents will still be here with our wider menu of treatment options and wisdom to share.

2.) Take it on and off Facebook.
I have found social media to be the most useful for networking, not for getting treatment suggestions. I’d rather get that from a trusted friend in the game who knows our family and son well. My recommendation is to go into these pediatric cannabis groups, skim their posts or write your own seeking parents in your local community and direct message them to meet you for coffee. MEET THEM FACE TO FACE and create a real relationship with someone WHO GETS IT. All of it.

3.) START A LOCAL SUPPORT GROUP. START A LOCAL SUPPORT GROUP. START A LOCAL SUPPORT GROUP.
You don’t need any special skills to create a support group. Even though I have schooling and experience, that’s not at all what has made our group successful. It’s everyone showing up to share what they are learning - and they do. We can talk for hours - and we do. All I provide is a time, location and authentic friendship. My family needed a more neurologically diverse community, as much as we needed education and resources. I’m wondering if yours does too?

4.) Get involved.
If you are a parent who has been treating your child with marijuana, I am tasking you with sharing what you know. Our kids can’t afford for us to keep this in the shadows and THE WISDOM YOU HOLD IS PRECIOUS. I know you are weary and overwhelmed but I bet we could find some way to involve you without exceeding your bandwidth. Update your social media or blog about what you are doing and where you are finding quality support. Or send me your story and resources - I’ll share them! Share your family’s story at church, school and with journalists. Mentor another mother. Wear a t-shirt, put a sticker on your car, talk about it in public. CREATE ART. Be an active part of the growing consensus we need to turn the cultural tide. And have I suggested STARTING A LOCAL SUPPORT GROUP?

If you are an alternative healthcare professional, I am also putting you to task. The medical profession appears to be leaving this one in your domain full of other unsanctioned treatments, although you’ve also been slow to get involved. If you are a doctor of Naturalpathic Medicine, Acupuncture, Chiropractics, Biomedicine or . . . WE NEED YOU to find a way within the limits of your license to help empower parents.

SOCIAL WORKERS!!! I can’t promise you any income, but if you’re able to lend your skills helping families navigate the medical/marijuana systems with safety and self determination WE NEED YOU TOO. This can look like referring inquiring families to the right resources and reading them yourself, including Dr. Bonni’s book and her recent study on the efficacy of artisanal oils. Or sharing your office space with a LOCAL SUPPORT GROUP. Or by just creating a safe place for parents to explore their questions.

Of course you should tell your doctor, but maybe keep your expectations low when it comes to receiving direct patient care. I don’t want to waste any desperate mother’s time or make her feel extra insane by sending her into the Black Lodge without this warning. But don’t worry because we have shared our resources here and here. From doctors, to nurses, to nonprofit organizations, to parent experts, you’re sure to find someone who aligns with your values to help you treatment plan.

And while I don’t know a lot of doctors who believe in this medicine, I do know a lot of parents WHO BELIEVE IN YOU. Even as us pioneers chart this new territory, we deserve to feel supported and empowered. And I find that support in our growing pediatric cannabis community, the one we are creating together.

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*Dear Dr. Hussain,
I am also a mandated reporter in California as a Licensed Clinical Social Worker. I’d like to ask you to please stop promoting within your profession the use of fear as a tactic to discourage families from using artisanal products that we know save lives. Let’s remember that CA state law protects children as medical marijuana patients. Nor are parents abusive or neglectful who choose to use it. I know you know that CPS is not especially concerned that we are.

I know you understand why most of us cannot wait for Epidiolex. I know you understand the nature of seizure disorders and know that there is little to predict what will work for each child. We know that Epidiolex will not work for every one. And that the best medicine will always be the one that does work. Parents will always need more options than your profession provides and there will always be a market for artisanal products. My hope is that you all would be discussing how to support us as real people with maturity and honesty, even if our treatment choices aren’t science’s first choice.

There are common sense ways to be safe that would be more beneficial for parents to hear than absolutely baseless threats of CPS involvement. It is critical that your patients’ parents trust you and your profession.

In this together,
Allison Ray Benavides, LCSW