JASON & JAYDEN’S JOURNEY

JASON & JAYDEN’S JOURNEY

You may have heard their story on Weed Wars, Weed 2 (with Sanjay Gupta), and the documentary Culture High. Jason David began treating his son Jayden with cannabidiol when he was was four years old. He obtained his first CBD tincture from Harborside dispensary in Oakland, California, and documented the first four days of treatment on the short-lived television show Weed Wars. Now five years later and Jayden is nine years old, taking his own brand of CBD medicine appropriately named “Jayden’s Juice.” We met Jason, Jayden and a dozen of other patients currently using Jayden’s Juice as their medicine for epilepsy and autism.

Jayden has Dravet syndrome, also known as severe myoclonic epilepsy of infancy (SMEI). It is a type of epilepsy with seizures that are often triggered by hot temperatures or fever and often begins around six months of age. 70%-80% of patients with Dravet syndrome carry rare mutations in the sodium channel gene SCN1A, which encodes an important component of neuronal firing, creating a deficiency in preventing seizures. Approximately 90% of Dravet mutations are ‘de novo’, meaning they are not inherited from a parent. In Jayden’s case, neither of his parents carried the gene that, in extremely rare cases, can be inherited.

Dravet syndrome it is characterized by cognitive impairment, behavioral disorders, and motor deficits. Behavioral deficits often include hyperactivity and impulsiveness, and in more rare cases, autistic-like behaviors. SMEI is also associated with sleep disorders including somnolence and insomnia. The seizures experienced by patients with Dravet syndrome become worse as the patient ages since the disease is not very predictable when first diagnosed.

Jayden was born a normal boy. At four months old, he started having seizures and developed Dravet Syndrome. Jason describes it as a downward spiral from then on. Jayden was prescribed 12 medications, including rectal injections of Valium for his seizures. He was having grand mal seizures that lasted an hour and a half, and he would have myoclonic seizures all day long. Grand mal seizures involve a loss of consciousness and violent muscle contractions, caused by abnormal electrical activity in the brain. It is the kind of seizure most people picture when they think of seizures. Myoclonic seizures are brief shock-like jerks of a muscle or group of muscles, where the person is usually awake and able to think clearly.

To control the seizures, doctors prescribed a “magic three” cocktail of pharmaceutical drugs that initially incited a honeymoon phase for a few months, but then things worsened.

“We were at a life and death situation. Jayden was dying from the medications,” Jason said.

In April of 2011, Jayden had not slept for a few months. Jason said, “Imagine not sleeping one day, let alone not sleeping everyday. I made a decision to make a change. God showed me a sign to give my son cannabis.”

Jason began conducting his own research on CBD, at a time when no other parents were out there talking about cannabis with children and epilepsy. The Cash Hyde Foundation was a charity he found for children with cancer, but did not find any support for Dravet syndrome patients.

His research kept leading him back to the United States patent number 6,630,507, issued to The United States of America as represented by the Department of Health and Human Services (Washington, DC), issued October 7, 2003. He founde evidence that the government owns the patent to using cannabinoids as antioxidants and neuroprotectants. Not only is this proof that the Federal government knows there are medical benefits to cannabis, it is hard written proof that CBD is a neuroprotectant.

Convinced CBD was the answer, Jason went to a dispensary to obtain CBD. The part of the story left out in Weed Wars was that he had the medicine in his possession for two weeks before he administered it to Jayden. “Everyone was scaring me. The first day I gave it to him, was the first day that he didn’t have a seizure in his life. I went back to the same dispensary, and got the same company’s CBD brand. There were no labels showing percentages, or levels, or ratios, or anything like that. I gave it to Jayden and it wasn’t working. I realized something was wrong,” he recollected.

At that point in time, Jason started working with Dr. William Courtney, a world renowned doctor; known for curing cancer for an 8 month old baby with cannabis. He educated Jason on ratios and testing. Jason then had the medicine he was using tested, and found out that there was no CBD in that batch.

Shortly thereafter, he began further researching plant material, the flowers the plant itself, and was able to obtain a high-CBD, low-THC plant. He began asking other people to make the medicine for them. For 6 months, a company made Jayden’s medicine, and Jason even helped them onto the cover of the LA Times, which is when they told Jason they would no longer make the medicine. Jason explained, “That left me hanging; [it] left me desperate.”

As fate would have it, one day at a restaurant, Jason met a local man who had heard his story and wanted to work with him. At the time, Jason was paying $400 for ounces and $2,800 per half pound in order to make medicine, it was costly trial and error process. He received donations
from friends and his church to help subsidize the cost of the medicine while he figured out the right ratios. He says he gave the plant to 10 people and this new guy was the only one to not dilute the ratio.

“He was growing it correctly with the ratios, the others ruined the plant. It’s whole plant, not hemp. Hemp isn’t for medicine, it’s like the garbage of cannabis,” Jason said.

At one point they tried hemp CBD and Jayden had 9 grand mal seizures in one day.

Jason explains, “It’s not one size fits all. This plant is not half evil and half good.”

Cannabidiol was so successful for Jayden, Jason started weaning him off the opioid medications. CBD gets metabolized through the same liver channels as benzodiazepines. Jason found that CBD did not work during the withdrawals which included attacks, tremors, and hallucinations, so he started giving Jayden THC and THC-A.

THC-A is a non psychoactive chemical profile of the plant that has anti-inflammatory, neuroprotective and antiemetic effects. “Everyone just talks about CBD, CBD, CBD. They see it on TV; but you need the whole plant,” Jason stated.

Jason points out that people develop a tolerance and notes that adjustments must be made from time to time. He admits that while using cannabis and cannabidiol oil has made monumental improvements to Jayden’s quality of life, his life is still not perfect. Jason also explained that sometimes it is hard to pinpoint the appropriate dosing for each patient, and that it is a trial and error process.

Through their research, they found that each patient has a different reaction to different bases. Jason says they have some patients using a coconut oil extraction doing great while others do terribly with it and the same with olive oil, MCT oil, alcohol extractions, etc., using the same plant material.

Prior to using cannabis oil, Jayden was having about 200 grand mal seizures a day. Jason even had trouble obtaining rectal diazepam at Walgreens because his insurance company thought he was selling it on the street. Since they have weaned him off 22 pharmaceutical drugs, and are down to the last two pharmaceuticals.

Jason says he’s working on setting this project up, so he can really focus on weaning Jayden off the last two pills. “It’s hard, he needs my full attention in going through the withdrawals. He’s my number one priority,” Jason said.

It took three and a half years to get Jayden off 22 pills, and Jason says taking a 10mg pill and even shaving off just a hair of medication can causessevere withdrawal symptoms like head zaps and seizures. Benzodiazepine withdrawal syndrome can be extremely dangerous, especially for a child. Jayden never had these symptoms before, but the doctors chalked it up to his epilepsy.

Jason said, “I went and talked to people on this medication, two years after being off the medication, and they were still having brain zaps.”

He used to attend support groups and Dravet Syndrome Foundation conferences around the nation. “I got kicked out of all the Dravet syndrome meetings in different states – before anyone came out with cannabis, I was treated very bad. The same people that kicked me out are trying to legalize only CBD states,” Jason said. “I feel bad for these parents, because they’re not being educated on the whole plant. The whole plant is the most important thing.There has been a fight for this plant for such a long time. They’re brainwashed to think CBD is the only thing that is good for them… That’s the biggest mistake anyone can make.”

Jason believes it is not right to fight for one specific aspect of the plant., He observes parents fighting for only CBD right now, and hypothesizes that when it does not work they will come to the realization that they need the whole plant. Wishy washy stances hinders the parent’s credibility and makes it difficult for city council members and legislature writers to take them seriously.

He shared stories about other parents that say CBD did not work for their children, because they only tried one product, and now they’re turning to brain surgery. Marketing can make people believe there is only one product out there, but Jason points out there are 20,000 different strains of cannabis, thousands of ways to extract it, and hundreds of different bases. There is no “right” way, what works for one person may not work for another.

“People aren’t trying different things. Our kids should not suffer. Don’t give up,” Jason said.

Another story he shared was a family that turned to fenluramine/phentermine (fen-phen), after learning about one German study treating epilepsy with the popular 1980s weight loss drug. They gave up on cannabis after moving to Colorado because they had not seen the results they were hoping for with their 5 year old.

Jason stated, “We experiment trial and error with chemicals, why not experiment with this plant? In thousands of years, no one has died from cannabis. On pharmaceuticals, your kids are getting worse, a quarter of a million people die a year from pharmaceutical drugs, but no one says a thing. Pharmaceuticals don’t work, so why do they keep prescribing them? I’m not anti-pharma, but some of the things we use are pretty scary. There’s good and bad in everything.” When I asked Jason what he hopes to achieve with Jayden, he said, “I‘m thankful for everyday and every moment, I’ll take whatever I can get. I’ve already achieved more than I thought I would ever achieve with Jayden already. So, I’ll take anything and I’ll take everything. My goal is to get him to say, ‘I love you.’ He’s getting closer and closer and he’s trying. I hope to God he will, but I know he loves me. Actions speak louder than words, and he shows more action on how much he loves me, how much he needs me, and how much he adores me; I need him too. He’s made me the man I am today. I’m very thankful for what I do have, I could be in a much worse position if it wasn’t for Jayden.”

“Jayden’s suffering isn’t for nothing. Jayden has saved many lives. Instead of cannabis being a last resort it can hopefully be a first resort, so people don’t have to go through what Jayden did,” Jason said optimistically.

The UCSF pediatric neurologists that are treating Jayden support the use of CBD and cannabis oil for epilepsy. They are treating over 100 patients there, the youngest being 8 months.

When asked what he would do if there was no access to CBD or THC oil, he said, “If I had to use anything else I would use diet, that’s the main thing I would use.”

He is a religious man stating, “I’ve talked to my Bishop at my church. The big thing out there with our Christian community is that everyone’s scared of it because we’re Christians. It says in the bible, ‘Use my plant, use my seeds.’ Don’t blame God for saying it’s evil. God wouldn’t do that to us.”

“Our community is blinded and very easily brainwashed from propaganda… this plant – that’s never killed anyone. This plant is so dangerous, but not killing anyone, but we use everything else including alcohol, which kills people every day. I say, ‘Try it, if it doesn’t work, then I understand.’ But what if you try it and it changes the rest of your life? What if it saves your life?”

“When people call me telling me crying, [saying] ‘I owe you my life, I love you,’ and I haven’t even met this person; it’s because they’ve tried Jayden’s Juice, and it’s saving their life, it makes me stronger to fight for what’s right.”

Jason proclaims, “It doesn’t matter that it is cannabis or not, if it was Pepsi that was saving my son’s life, I’d be fighting for Pepsi. This is what’s saving my son’s life, and I see it saving so many other’s lives, so I have to fight for it.”

“We have the right to this God given plant. It’s been put on Earth for a reason. So, it’s against the law to use something natural. They say we haven’t researched it, but it’s been here for 5,000 years. But we’ve researched everything else in the world, and drop bombs in other countries, and make these pills out of nowhere that go through the FDA process in a year and next thing you know, they’re legal? But we can’t figure out this plant, that’s been here for 5,000 years, that shows ancient remedies from back in the day from people using it; but we can’t figure it out? It scares me,” Jason passionately states.

“The first time I showed the patent document to my attorney, he called me up the next morning and said, ‘I couldn’t sleep last night, because of that paperwork you gave me, I read it, I couldn’t sleep. That stuff helps with everything! I have family members with, this, this, this, and this, can you help me?’”

Jason continues, “It’s scary that it’s a Schedule I drug, yet the Federal government owns the patent on it, but there are no medical benefits? What are the medical benefits from benzos, alcohol, cigarettes; all these things that are legal – energy drinks – all these things people are dying from. How is all that legal but this plant is so evil, and vicious and deadly? Propaganda has ruined what this plant can do for so many people.”

Jason hopes within 5-10 years everyone has safe access. In California, there are no real regulations, so he poses the question that what if we regulate and legalize it? Then there would not be anything to be afraid of.

“It just shocks me that Arizona already has regulation for it. You’re only keeping it away from the people that really need it. We need more research, real research, not lab rat testing. Why not find out from the people that are really using it,” Jason said.

“We are cannabinoid deficient. The last time we had cannabinoids was as a babies from breast milk. All auto-immune disorders come from that deficiency… There are so many things that are going to come out in the near future. CBD is going to be old. THC-A is the new CBD that people don’t even know about yet,” he foresees CBN and CBG becoming groundbreaking components with specific defined medical benefits.

“The saddest thing is you’re going to lose a loved one because they’re not going to use the medicine – the real medicine. I hate the word “high.” We don’t get high we get medicated; you know when you get high? On a chemical,” Jason said.

“I thank God for this gift that brought my son back. Cannabis saved my son’s life and saved my whole family. When you’re child is sick and dying your whole family is dying; it brought back my son, it brought back my family.”

Jason says, “Do your research. I tell doctors, ‘If you really believe you want to help someone, and you want the truth, instead of knocking it, why not research it and try it? But if it does work, research it and prove it.’”

“If one person tells you it’s working, and everything else out there isn’t working, try it. We’re still learning on an everyday basis. Jayden’s Juice is an option. We made it so we can help people. We’re not saying it works for everyone or it cures anything, it helps with different symptoms.”

He told me about multiple sclerosis patients, autistic patients, and cancer patients all having success with Jayden’s Juice.

Jason recommends that when trying CBD or THC oil, start with a few drops, a very low dose, then move up slowly, as no two people are alike.

“It’s not one size fits all, read their bodies. It’s not milligram per pound. Figure out what works. everyone wants to find a cure right away and it doesn’t work like that, but sometimes it does.”

Call 323.331.6775 to order Jayden’s Juice or got to www.JaydensJuice.com.

B. LE GRAND
EDITOR-IN-CHIEF

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