From Pain To Paralysis: Billy’s Cannabis and CBD Journey

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A father tells the tale of how he came to believe in cannabis as medicine and shares his sons battle:

There are so many different health conditions that are treated by cannabinoid medicine. The power of the plant affects millions in such a positive way that needs an alternative to conventional medicines. Plant-based therapy such as cannabis extracts are changing and saving the lives of people daily – and when it comes to 3-year-old Billy of San Fernando Valley, California, the same holds true. CBD is changing his life in a big way and allowing this patient who’s fighting a severe neurological disorder to live more peacefully. After spending a few hours with his Dad, William, the urge to share their story was overwhelming. What started out to be an ER trip over something minor now has his son in a wheelchair hoping to someday walk again. What’s interesting about William, like many other people, is that he had very little interaction with the world of cannabis and wasn’t a believer in the plant throughout his life. First, his father’s cancer battle brought cannabis into the scene but it was a bit too late. Many will finally accept that the plant has the ability to fight off life-threatening illnesses a bit too late which was the case with grandpa – but I’m sure that he’s looking down from the heavens above with joy that his decision to accept cannabis oil has led to his own grandson’s life being better. William tells his story so well there was no need for an interview, my hopes are this beyond intense tale is enjoyed as much as it educates.

“I first started looking into cannabis for my father who had stage 4 bile duct cancer. It was very difficult to approach him about it. We had many, many conversations on how it would help with intense nausea he felt after every chemo treatment. Unfortunately, it wasn’t until two months before his passing did he become open to trying it. I didn’t know a whole lot back then, certainly didn’t know about RSO (Cannabis Oil), or I would go with that. He was vehemently opposed to smoking and vaping. I gave him an edible, but it was far too intense for him because he didn’t follow the dosage guidelines.

A tincture was a good middle ground. It was a crude tincture made of high-proof alcohol and some flower I acquired from a dispensary. I don’t recall the strain and honestly thought all the purported effects were just all fictional. I didn’t understand terpenes at the time, I thought it was all the same. I had no idea what I was doing, but it still helped. I wish I could say that it put his cancer into remission, but it was probably too little, too late. But it did help him with pain but cancer had now spread to all of his bones, lungs, liver, and multiple other organs. His appetite was next to nothing because of the high dosages of opioids he was on. After he lost his battle with cancer, my view on the medicinal benefits of cannabis had changed drastically. After watching the CNN special on it, I started reading more and more about CBD. I was intrigued listening to Charlotte Figi’s story and puzzled as to why and how a plant is illegal. It also riddled me with guilt and remorse because if I knew what I knew now, I believe that my father might have lived to see me get married and meet his grandson. This rekindled my interest but didn’t really take a deep dive until my 3-year-old son became seriously ill in October 2018.”

“Last October, my son went to the ER at Children’s Hospital Los Angeles after complaining of severe foot pain. He had a cold previously, but nothing uncommon for a 3-year-old whom attends daycare. He was immediately admitted to the hospital and in less than 48 hours later, he become completely paralyzed in both his legs. His upper body also severely weakened. The devastating diagnosis we were given was Acute Flaccid Myelitis, or AFM. It’s a relatively new disease and it is supposed to be extremely rare – it affects less than 1 in a million. Medical experts think it is caused by a retrovirus that for still unknown reasons attacks the spinal cord and causes severe damage. The best neurologists in the world cannot give us any kind of prognosis. There is no known treatment for AFM other than intensive physical and occupational therapy. My son since October has done more than a 1000 hours of therapy and has made significant improvement, but is still wheelchair bound and paralyzed in both of our legs. In August, he also had an experimental and cutting edge nerve transfer surgery.”

AFM can be moderate to acute. In Billy’s case, it’s acute which means he’s in a wheelchair and fighting to someday walk again

“CBD is a regular part of our son’s daily supplements. We are giving him the cannabinoid under the strict supervision of a doctor who specializes in pediatrics and cannabis. You may have seen her in the documentary, “Weed the People”, her name is Dr. Bonni Goldstein. We are giving him a daily tinctures (CBD, CBG, and CBDA), and a THC/CBD topical for neuropathic pain management. Recently, we have started applying RSO mixed with MCT topically over his spine with DMSO. We had him on gabapentin, but he suffered from severe side effects, so we weaned him off as soon as we could. OTC pain relievers such as Motrin do very little for nerve-related pain. Since starting CBD, the bouts of neuropathic pain have decreased in frequency but have not gone away completely. We also believe that keeping inflammation down is of utmost importance.”

“I work for an extremely conservative company so I cannot openly discuss at work or in social media. Some of our close friends know, and I think they understand our situation but aren’t exactly supportive of it. I know of many people, including all of the parents in our AFM parent group, that could possibly benefit from CBD but I feel unqualified to give advice. I’m still learning myself and don’t have any medical credentials. I’m just a dad who will walk to the ends of the earth to find anything to help my son in his recovery. As previously mentioned, he was on gabapentin, but he had severe and undesirable side effects. His neurologists insisted that it was safe and effective and could be taken long-term with no risks. We found our experience to be inconsistent with that. He became extremely hostile and agitated. He exploded with rage or broke down emotionally quite often due to it. The icing on the cake was when we asked our neurologists how this medicine worked exactly, their answer was they didn’t know. So they were giving my 3-year-old son something that alters his brain, but they don’t know how it works. We weaned him off as soon as possible. He isn’t on any other medications.”

“My advice to people who are interested in this plant medicine is to start by learning about the Endocannabinoid system and conditions that are associated with deficiencies or imbalances. I personally have to know a bit about the person I’m speaking with in order to speak to them in a way that is most effective for them. I like to research things, so YouTube videos and links to studies are things I like. Others may get more out of testimonials from people they know or online communities like Reddit. But really I think the key is to research and decide for yourself. Unfortunately, most people turn to cannabis after they have reached the end of their rope because of all the stigma and misinformation out there. The internet is a wonderful but also confusing place. I’m not one of those people who believe cannabis is a panacea and completely harmless and without contradictions. This is why your interview grabbed my attention, Mike because you talked about contradictions. A lot of people are one extreme or the other. Education like that you are providing is paramount. Just telling someone to go use cannabis with a serious condition without any knowledge of their medical history, experience with cannabis, or dosing guidelines is irresponsible.”

“I believe our lives have changed significantly. When allopathic medicine had nothing to offer us, we had to expand our paradigms and look deeper into less conventional medicine. Our views on cannabis as a true healing medicine have been solidified. This experience has also had a profound impact on our faith. It’s made us stronger and braver not because we’re so amazing, but we have to. No one will advocate for our son as we will. It’s hard to say exactly how CBD has improved the quality of my son’s life, but as his parents, we feel like it has improved his anxiety and he is more engaged in his therapy sessions. He is a happy kid overall. For that, we feel blessed.”

“I think one of the biggest stigmas still is that people only use cannabis to get high. There are plenty of nonpsychotropic compounds such as THCA, CBDA, CBG, CBN, etc. that still have tremendous medical properties with getting high. And really, is being happy, hungry, being pain-free, and sleepy really such terrible side effects? The standard by which cannabis is judged is completely ridiculous. Pharmaceuticals can blind, maim or kill you, but that’s OK. But a plant with very few side effects and a history of safety cannot have any side effects. The US government holding a patent for CBD as an anti-inflammatory and neuroprotectant completely is contradictory to the Schedule 1 designation that cannabis is given. “

“Unfortunately my wife had to quit her career to become my son’s full-time caregiver and I am the sole source of income and we need the insurance to pay for his therapy. We are surviving off savings we had for a new home, which was our dream before our son got sick. I don’t know what my purpose in life is. All I know is that I know that people need this information and that I need to pay it forward. I would love to know how we can help others. I can literally talk for hours about this but have no one to speak with without fear of losing my current job or anyone in my circle that has the same interest in cannabis as medicine. I don’t know anyone personally in this space but would be very interested and motivated on how I can educate myself and others. I was pleasantly surprised that you are relatively nearby in Santa Barbara.”

“We have good days and not-so-good days. Sometimes, the gravity of the situation is crushing and suffocating. I and my wife look at each other wondering if this is as good as this gets. Is our son ever going to live a happy life – wondering if all the things we are doing making a difference? Everyone tells us that we are so strong and brave and that they couldn’t do it. I want to tell them the cold hard truth. We are “strong” and “brave” because we have to be. We have no choice. We have no choice but to put on our brave face in front of him and assure him that everything is going to be OK and that he’s going to walk again, that someday he’ll play and run around like he used to. We walk in faith but or faith is tested daily. I’ve never been a jealous or envious person, but how we long to see him be able to run around and be doing what a normal child should be doing. Instead, his days are full of appointments and taking supplements. AFM has robbed us of joy. It has robbed my son of his childhood. It has taken an extreme toll on my marriage, finances, and emotions. My wife’s patience and sanity are hanging on by a thread. I sometimes wonder if this life is all there is. We question inside often is whether or not we have failed him as parents. I know we are one family of thousands who experience heartache daily. I apologize if this is going off-topic, but people need to hear the real toll that being a patient or caregiver takes on people. I’m not saying cannabis is the panacea for all of life’s woes, but it can be an invaluable tool for health and wellness, and is time for people to be educated and be able to decide for themselves whether or not his healing plant should be a part of their wellness journey.”

Without a doubt, William has become much more knowledgeable than he possibly believes he is in regards to cannabinoid medicine. When a person has to learn in order to treat their family members – to save their child’s life – their knowledge is generally far greater than many that are researching and studying the ‘science’ behind the plant. Patients and caregivers will, almost always, determine their best protocol through trial and error. This father has gone far beyond this and is applying multiple cannabinoids in his son’s protocol that are very therapeutic. There are so many plant constituents and most are very confused when it comes to what they should use and how much of it. As we read more about other patients it becomes easier to learn the best methods to attempt when it comes to treating ourselves.