Allison Ray Benavides, Medical Cannabis Advocate, USA
If you wouldn’t expect the titles Licensed Social Worker and pediatric Cannabis advocate/mother to overlap, that’s because you haven’t yet met Allison Ray Benavides. Perceptions are changing, and this amazing, compassionate woman is making sure of it. When her own son was diagnosed with an intractable seizure disorder, her open-minded stance on medical Cannabis led her family down a path of empowerment and healing. Now she’s dispelling fears surrounding using this medicine for children and ensuring families have access to the support and resources they need for successful healing journeys.
My family’s introduction to pediatric Cannabis actually came before my son was diagnosed with intractable epilepsy. This whole thing has been a very spiritual journey for us. Two weeks before Robby’s diagnosis, I came across an article about a father treating his son with medical Cannabis for seizures. I couldn’t stop thinking about it. I was so impressed and so moved. I even cried about it. I felt huge compassion for the child, but I carried this man’s story with me and was overwhelmed by thinking about what this brave father had been through. Little did I know that two weeks later, our son would be diagnosed with a seizure disorder and that I would join this man on his journey and call him a friend.
I can’t even describe how many dark and scary days and nights there have been. Robby was diagnosed in February 2013, when he was just 3 1/2. He started having 25-100 seizures a day. He was diagnosed with Doose Syndrome—a rare form of epilepsy—and sent home with pharmaceuticals within two weeks. So, yes, we did try the conventional route first. We had no preconceived notions, no reasons to believe it wouldn’t work.
We connected with a very well respected neurologist. Don’t get me wrong; he was wonderful and I know he did everything he could. But essentially what he told us when we left his office was Good luck…this struggle is gonna be the rest of your life.
However, my son’s disorder was diagnosed as “intractable”, meaning resistant to standard medications. Translation: we can’t really help you. So, I can’t begin to express how comforting it was to know, from day one, that we had alternatives. There was a community of parents using pediatric Cannabis and fighting for their children’s lives out there, and we just had to connect with those people. And connect we did! We started meeting monthly, and together we all created a source of information and support we simply did not get in the medical/pharmaceutical world. That was the other beautifully healing piece of this puzzle for me and my husband. We were able to connect with like-minds on similar missions for our beautiful children.
The prognosis for my son—and for so many other children with these extreme seizure disorders—was pretty grim, despite quality healthcare. We connected with a very well respected neurologist. Don’t get me wrong; he was wonderful and I know he did everything he could. But essentially what he told us when we left his office was Good luck…this struggle is gonna be the rest of your life.
Still and all, it was unrelenting. We were at the emergency room on a regular basis. Robby had black eyes. He has bitten off parts of his tongue. It was predictably unpredictable and just exhausting for everyone, most of all our poor little son.
I’ll spare you most details of the roller coaster ride, but basically even on the prescribed pharmaceutical medications, our son was having up to 100 seizures a day! The first medication, Keppra, made the seizures worse. We switched to Depakote and the seizures decreased and became less violent, but didn’t alleviate altogether. That was one thing in particular I wasn’t prepared for—how violent this disease really is. It comes down to watching your child get beaten up multiple times a day, day after day. It’s brutal, heartbreaking. At least with the Depakote, he would have maybe 20 seizures a day on a very bad day. So, there was some relief.
Still and all, it was unrelenting. We were at the emergency room on a regular basis. Robby had black eyes. He has bitten off parts of his tongue. It was predictably unpredictable and just exhausting for everyone, most of all our poor little son.
Essentially, everyone knows standard meds are most likely not going to work–thus the word “intractable”. So, why do we keep doing this?! Why? Because standard medical practice has nothing else to offer us. That’s why.
One thing I’ve learned is that cycling through different medications for intractable seizure disorders is just part of the routine. Doctors know that there is no “cure”. They know that anything they prescribe will not bring real relief for many people. They also know that each new med brings with it only about 5% chance for success. In other words, with each new prescription, your child faces a 95% chance that the medicine will fail.
Essentially, everyone knows standard meds are most likely not going to work–thus the word “intractable”. So, why do we keep doing this?! Why? Because standard medical practice has nothing else to offer us. That’s why.
Most of 2013 was just a blur of trying to make sense of this whole new path we’d been placed on and doing our best to find our way. Robby had an EEG in October of that year. It was a mess, all over the place. The doctor said he would always have a messy EEG, even if by some miracle he were seizure-free. What a dire prognosis that was.
We started him on Charlotte’s Web the Sunday before Christmas. It sounds like a story book, I know, but Christmas day was the first time my son was seizure free since before he had been diagnosed, almost a year!
Well, that’s when things changed. Realm of Caring brought Charlotte’s Web (the low THC strain used to treat seizure disorders in children) to California in December of 2013. From a list of over 1000 children, they chose 20; Robby was one of those. We started him on Charlotte’s Web the Sunday before Christmas. It sounds like a story book, I know, but Christmas day was the first time my son was seizure free since before he had been diagnosed, almost a year!
The following week he had more seizures, and I was devastated. I developed Shingles from all the stress. We had been completely transparent with our son’s doctors and his neurologist about our use of Cannabis, something I always encourage other parents to do, as well. He told us to take Robby off of the CBDs. I said, “No, there has to be another alternative.” So, he ordered a blood test, which showed that the Depakote levels were too high, toxic in fact.
…the neurologist had said he would NEVER have a normal EEG. Well, guess what. It was NORMAL! In February of this year, we did another EEG—a 24-hour test this time—and it was normal, too! That’s the power of this medicine.
We lowered the Depakote by 25%. I talked with multiple parents in the meantime, who suggested we raise the CBD level. So, we just sort of did this little dance, figuring it all out. Long story short, it worked. On February 11, 2014, almost exactly one year from the time Robby was diagnosed, he was seizure free! Then, in April, we had another EEG. Now, remember, the neurologist had said he would NEVER have a normal EEG. Well, guess what. It was NORMAL! In February of this year, we did another EEG—a 24-hour test this time—and it was normal, too! That’s the power of this medicine.
There’s something magical there. Cannabis and CBDs work. I can’t even express the night-and-day difference in my family’s life now. We’re not in constant fight or flight mode, just waiting for the next violent seizure. We have a life. I almost feel guilty; so many children and their families out there deserve to experience what this medicine can do.
We’re very realistic about this whole thing, too. Whether using Cannabis or pharmaceuticals, seizure disorders of any kind can recur. But we have a great seizure-free stretch behind us thanks to Cannabis and we are grateful every day. And, we know that we have a community of support and a medicine that we can adjust; that fact is empowering. And it’s something that Robby can learn to manage as he matures.
My son has been seizure-free for 18-months! I never thought our life would return to this kind of peacefulness. He’s so different now. Before Cannabis I could see him slowing down—his speech, his processing. It was a chilling combination of the damage done by seizures and side-effects of the meds… He has a shot at an active, happy life.
To be fair, standard meds work at least to some degree for about 60% of seizure patients. They and their families get to enjoy the convenience of picking up a prescription at the pharmacy and simply following the directions. They know it’ll work. They can travel with it with no legal repercussions. That route simply didn’t work for us. But the blessing of Cannabis is life-changing for us and so many other families. And now we don’t have to deal with side-effects, either.
We feel so lucky! We tried only two pharmaceuticals and then introduced Cannabis. I have friends who have tried 20 or more pharmaceuticals…with no real relief! I know that taking this path has been fateful for us. There’s a reason that I read that article about the dad, his child, and Cannabis treatments when I did.
My son has been seizure-free for 18-months! I never thought our life would return to this kind of peacefulness. He’s so different now. Before Cannabis I could see him slowing down—his speech, his processing. It was a chilling combination of the damage done by seizures and side-effects of the meds. He was trapped. And now he is free and thriving. The healing effect of Cannabis happens on so many levels. My son is alive again. He’s not numbed-down by pharmaceuticals and the side-effects. He’s present. He’s healthy. He has a shot at an active, happy life.
…while there’s a growing amount of information out there, it really came full circle back to all of us just supporting each other, sharing our experiences, and figuring it out—very grassroots! It was a scavenger hunt two years ago, and still is to some degree. The website was born out of the desire to make it easier for parents to find advice and words of practical experience.
And now I’m helping other families embrace the healing power of pediatric Cannabis. What started as simply connecting with other parents and children looking for help and answers has evolved into Pediatric Cannabis Support. When we started meeting monthly, we gained momentum. We realized there was no one who could really tell us how to medicate our children. We needed advice. We needed to learn from people who were doing it…and while there’s a growing amount of information out there, it really came full circle back to all of us just supporting each other, sharing our experiences, and figuring it out—very grassroots! It was a scavenger hunt two years ago, and still is to some degree. The website was born out of the desire to make it easier for parents to find advice and words of practical experience.
Plus, of course, parents would call and, while I’m always happy to speak with people who are immersed in the struggle, taking so many calls and repeating the same info was not the most efficient way to handle it. My husband is a tattoo artist, and one day while he was updating his site, I asked him to create a simple site for our group. That’s how it all started. The site is in its infancy, but we do our best to keep it updated with relevant information. I’m excited to see it evolve.
When so many people are terrified of repercussions from doctors and CPS for treating their kids with Cannabis, I’m thrilled to be able to offer insights on how to navigate “the system”, avoid or minimize dependence on pharmaceuticals, find compassionate care, and stand firm in parental rights. It’s possible. I see it all the time.
For me, it serves dual purposes. It’s a great informational source. But through our blog there, it’s also sort of a landing-space for me, an outlet for my personal and professional insights and experiences. I think that sharing my family’s journey with other parents is especially valuable because by profession I am a Licensed Social Worker.
When so many people are terrified of repercussions from doctors and CPS for treating their kids with Cannabis, I’m thrilled to be able to offer insights on how to navigate “the system”, avoid or minimize dependence on pharmaceuticals, find compassionate care, and stand firm in parental rights. It’s possible. I see it all the time. A blog I wrote called “Taking CPS Off the Table” documents one woman’s experience in muddling through the fear of dealing with the powers-that-be. She’s a single mother of four children, including 3-year old twins, one with cerebral palsy who is having success with pediatric Cannabis. It can be intimidating to use this medicine on our children, but it’s do-able and it doesn’t have to be scary.
I always tell parents I’m talking to them as a parent, not as a representative of the state or any agency. But because I’m in the field, I can offer sound, objective insights and information. I want all of us—parents and children—to be safe. And the issue of safety is something we take very seriously. Our group is not a gathering of hippies making random Cannabis cocktails and experimenting on our children. We are as measured as possible. The bottom line is, this is not recreational. We’re not a bunch of rebels trying to prove a point. We are parents who love our children and we are healing their lives. And we are all playing a part in evolving the cause and the knowledge for successfully using pediatric Cannabis.
My son can sing now. He didn’t sing before Cannabis. He has a vocabulary now. Before Cannabis, he was limited to about 25 words.
As far as the different strains and whatnot, my bottom line is this: If it’s good medicine, it’s good medicine. We have had good success with CBDs. I do know parents in our group who combine CBDs with THC, as well, especially at bed time. So, my husband and I will do what works best for our son, period. I know parents using strains from different collectives and for different disorders and illnesses.
I want people to know three things about Cannabis. It’s safe. It’s effective. It’s gentle. And that’s one of the things that’s so empowering about this medicine. There are no gnarly side-effects, unlike most pharmaceuticals. This medicine allows you to make choices and to tailor what works to your unique child. It’s no one-size-fits-all prescription. Discovering what works is a beautiful process, like a dance where we hold our loved ones close and create it along with them. And if our children deserve anything, they deserve to be embraced and treated gently. That’s what Cannabis is; it’s like a warm, comfy blanket.
My son can sing now. He didn’t sing before Cannabis. He has a vocabulary now. Before Cannabis, he was limited to about 25 words.
It takes a lot of integrity to know what’s right for you and pursue it, especially in the face of uncertainty and even fear. If you are the least bit curious about pediatric Cannabis, follow your heart.
I love the path I’m on and fully intend continue traversing it. I would love to see my work with the site evolve one day into mainstream employment in this industry. I love what I’m doing. I love the children. I love the other moms I get to connect with. Looking ahead, I see myself always working with and supporting the other moms. I hear miracles all the time and want to share them!
It takes a lot of integrity to know what’s right for you and pursue it, especially in the face of uncertainty and even fear. If you are the least bit curious about pediatric Cannabis, follow your heart.
We are here to support you. We’re not afraid. There are resources, probably more than you can even imagine. Don’t be afraid of using this medicine. Don’t be afraid of agencies, schools, doctors, CPS, etc. Follow your heart. You are the voice for your child, and you are the one who can take action for him or her. And…you’re not alone!
Are you a parent of a child that may benefit from pediatric Cannabis? How is Allison’s story different from or similar to yours? Would you like more information about Pediatric Cannabis Support?
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