Tag Archives: Epidiolex

Growing Up with Hippie Parents in a Cloud of Smoke

A Child’s Perspective on Hippie Parents and Drug Culture in the Early 70s by Solitaire Miles

Why I’m Sharing This Story Now:

As marijuana legalization sweeps across America I feel compelled to share my story. What I experienced in the early 1970s as a child of hippie parents might seem mild compared to what some children face today because the marijuana of my childhood was far less potent than the high-THC strains now grown, sold, and distributed legally. Emergency rooms regularly treat children for marijuana overdose and severe vomiting episodes – a situation that should alarm us all. I’m writing this because I believe many parents remain undereducated about the real dangers marijuana poses to growing children, both physically and psychologically.

My Early Childhood

I was born in 1967 to hippie parents – who else would name their child Solitaire? For the first few years of my life, I stayed with my grandparents, thank goodness, because my parents were still in their teens, just out of high school, and they were living wildly and were both experimenting with a lot of drugs. I had a guardian angel though, my grandmother Connie was very protective of me, and I lived at her house and was raised there from birth. She taught me many things, how to eat, how to walk, she potty trained me, she taught me to speak… and all of the things that a newborn baby growing up to be a toddler need to learn. My loving grandmother adored me and raised me as if I were her own daughter.

The Change 1971

Sadly, when I was about 4 years old, my grandmother got sick and had to go into the hospital to be treated for epilepsy, so I had to live with my mother and father, which was not fun at all. They weren’t big time criminals, they weren’t evil people, but they were very addicted to drugs and they liked to party a lot. Every night there was alcohol and drugs in the house and lots of their hippie friends listening to music, getting high until the early hours of the morning. It was a very scary and difficult environment for me to be in after having been raised with my grandmother in her quiet Catholic household.

Life With My Parents

My father grew his own marijuana out in the woods somewhere and he sold it to his friends while he was going to college so he wouldn’t need a day a job while going to school. Apparently he grew a lot of it because there was always marijuana in the house. In our living room there was a big wooden box that held all of the marijuana in the baggies and the joint rolling papers. My mother showed me this when I moved in, and she not only showed me how to break up the leaves into baggies but also trained me how to roll joints so that there would always be an availability for customers when they came to our house.

If my parents were busy or weren’t home and I was alone (if you can imagine leaving a four-year-old home alone with a large cache of drugs), I could go and retrieve the drugs and give them to whoever came to the door for them. Often times in the afternoon or the early evening, friends would come over and I would be rolling the joints for them and passing them out to people as I was instructed to do. Everyone thought that it was so quaint and what a little soldier I was. The rooms would fill up with marijuana smoke and I would be encouraged to smoke the marijuana myself because they said it was natural and it was good for kids to keep them calm.

My Coping Methods

The marijuana made me really sick – it made me feel like I wanted to puke and it gave me terrible headaches. After I did my job of rolling the joints and passing out the cigarettes or the baggies to whoever showed up, I would go and hide in my room at about 6:00 at night after dinner. I would stuff a towel or a blanket under the bottom of my door so that their smoke wouldn’t come in, and then I would crack my bedroom window even if it was hard winter so that there would be fresh air in my room and I wouldn’t get one of those nauseating headaches. I would try to read a book until I fell asleep for the rest of the night. It would be hard sometimes to stay asleep because especially on the weekends they would have loud parties with lots of music and 10 or 12 people would show up and they’d hoot and holler and party and do their drugs until dawn.

The Long-Term Impact on My Adult Life

As an adult working in the entertainment business, it has been a challenge for me to try to remain working around clean and sober people. I am clean and sober and I do not drink or use drugs and alcohol, and I’ve never smoked marijuana. There was a time in my early to mid-20s where I did use alcohol, but I stopped that after I developed epilepsy, which is genetic in my family. Alcohol and marijuana both make my seizures worse. A lot of people think that marijuana can make seizures better, but one in four epilepsy patients are actually made worse by it. If you don’t believe me go to the national institute of health and research it, there is a drug called Epidolex created for kids who have Dravet syndrome, a very specific type of epilepsy and marijuana derivatives seem to help these kids but for as many as it helps it makes others worse and the drug has a 25% failure rate.

Working in the entertainment business has been very difficult since legalization, and I find it challenging to perform and work when people use marijuana on stage or in the clubs or restaurants where I would be. I’ve had to stop performing in person at many venues and I only perform in places that. I know for sure there won’t be any drug smoke in the venue and I prefer working in outdoor venues and concerts during the summer.

Secondhand Marijuana Smoke Affects My Health

A lot of people don’t like me or will refuse to work with me because they think I’m a prude or a snob, but if they understood what I went through as a child and that marijuana does negatively affect me, causing me to have migraines and seizures, maybe they would have some sympathy…. although many of them do not, even when I try to explain the simple fact that their marijuana smoke on stage is enough to trigger a seizure – and I would never want to have a seizure on stage in front of an audience. So now I am mostly a recording artist and have to be satisfied with that.

I’m not going to tell anybody what to do with their bodies, but I wish that they could be more respectful with their secondhand smoke because it does affect other people’s bodies and it does affect the health of their children, which are our greatest resource, and if America is going to continue to thrive, we need to raise our children with love, keeping them healthy, and teaching them to respect themselves and not become addicts. I feel sorry for any child that has to live through now what I lived through in 1971 because I know that the quality and the intensity of the drugs are so much stronger than my dad’s homegrown ever was.

Editor’s Note:  Here are some other articles on secondhand smoke:

Secondhand Smoke from Marijuana Worse than Cigarettes

Breathe Cannabis Free Oregon

Is Marijuana a True Medicine?

How Marijuana Passes as a Medication

Cannabis has been legalized, by vote, to be a “medication” in many states across the United States. No other medication in the US has been voted on and elected as a treatment option for illness. Because marijuana remains federally illegal, the FDA technically doesn’t have oversight over the production of the final marijuana products – including CBD, THC and combination THC/CBD products. Each state makes their own regulations and establishes their own regulatory system.

Continue reading Is Marijuana a True Medicine?

Campaign for Compassion Leads Pennsylvania Legislature

Is CBD from Marijuana for Epilepsy Really About Compassion?

Parents Opposed to Pot supports every effort to find cures for children who suffer, but it’s unclear if Pennsylvania legislators who passed a medical marijuana bill on April 13 really understood the subject.   Dr. Michael Privitera, President of the Epilepsy Society urged legislators to vote “no” on SB-3, but the legislators voted to follow anecdotal evidence rather than the science.  (Portions of the letter are below.)

Cannabidiol
Compassion should lead to testing all medicines. GW Pharmaceuticals had 3rd phase trials for Epidiolex, a marijuana extract that could help for seizures.

The manipulations of the marijuana lobby are typical: give people false hope, play the “compassion” card to manipulate public opinion and shame people into adopting their view.  Because there is so much drama behind the people who advocate for marijuana use to treat epilepsy, many parents are expecting miraculous cures that are not always forthcoming.  The pro-marijuana advocates need to warn that any relief CBD oil gives for epilepsy is not necessarily permanent.

The Children Given Marijuana for Seizures who Died

(GW Pharmaceuticals Epidiolex is for Dravet Syndrome, and for Lennox-Gestaut Syndrome   The question is wheter or not a

A family in Arizona who was part of a lawsuit to get the extracts for their son saw a dramatic difference in the boy, an improvement in all levels of functioning.  Yet the poor boy died. The family still advocates for marijuana extracts.  We understand the view of the parents — they saw their son have a better life for a brief period before his death.

A girl who had been the poster child for medical marijuana recently died. She no longer needed a wheelchair after moving from Connecticut to Maine for CBD.   It is estimated that 85% of patients with Dravet Syndrome survive to adulthood, although life expectancy is not well understood.

At the end of Dr. Sanjay Gupta’s Weed 3, it was mentioned that Vivian, the little girl whose family moved to Colorado because to have extracts of marijuana not available in New Jersey, was no longer being helped as much as she had been at first.

We are sorry for the parents who must go through so much to help their children.   We would hope they can be assured of purity — free from mold, fungi and pesticides.

How Marijuana Passed in Pennsylvania

Pennsylvania passed its bill on April 13 after legions of people worked tirelessly to emphasize that medical marijuana offers hope for epilepsy.  One of the moms who was part of the PA grass-roots movement, Campaign for Compassion, is Cara Salemme.  She has a 9-year-old son who has been suffering from seizures since age 5.  Salemme’s passion is understandable.  We hope that Salemme and other moms are not let down.

Lori Robinson, co-founder of Moms Strong said, “Apparently, only young kids who have disorders that break the heart can move mountains because parents whose kids are suffering egregious consequences from this plant really don’t garner any attention by legislatures.”  Compassionate Pennsylvanians should learn both sides of an issue.

So, MIchael Privitera MD, President of the American Epilepsy Society, who wrote a heartfelt letter on March 15, 2016, to Rep Matt Baker and the Pennsylvania Legislature, noting scientific studies and warning of the dangers of making law on such scant evidenceLegislators voted against Dr Privitera’s pleading of a “no” vote on SB-3. There are those kids  who develop the adverse condition like status epilepticus.  Here are excerpts from Dr. Privitera’s letter:

“Additionally, in 13% of cases reviewed seizures worsened with use of cannabis and in some patients there were significant adverse events. These are not the stories that you have likely heard in your public hearings or have read in popular press, but they are the reality of AES members who are practitioners at Children’s Hospital Colorado who have cared for the largest number of cases of children with epilepsy treated with cannabis in the U.S.

Unlike the product used in the GW Pharmaceutical study, the families and children moving to Colorado are receiving unregulated, highly variable artisanal preparations of cannabis oil prescribed, in most cases, by physicians with no training in pediatrics, neurology or epilepsy. As a result, the epilepsy specialists in Colorado have been at the bedside of children having severe dystonic reactions and other movement disorders, developmental regression, intractable vomiting and worsening seizures that can be so severe they have to put the child into a coma to get the seizures to stop.”    (GW Pharmaceuticals is a British Company)

The Dark Side of Marijuana and the Money

Rep Matt Baker
Rep Matt Baker is a legislator from Pennsylvania with compassion. Before serving in the House, he worked for a law firm where he specialized in serving people with disabilities, helping them obtain disability benefits before federal administrative law judges.

Rep. Matt Baker, Head of the House Health Committee had studied marijuana’s effects on various health conditions for a long period of time.  He expressed very reasonable concerns about the horrible side effects of marijuana and what can happen if medical marijuana is diverted to children and teens, as has happened in so many states.

(An 18-year-old in Washington state who had been given medical marijuana for a digestive issue experienced numerous psychotic symptoms which killed him in September of last year. Washington state has experienced an uptick in psychotic patients since legalizing marijuana.  The boy in Pennsylvania who recently died had a combination of marijuana wax and Xanax in his body which contributed to cardiac arrest.  He had a prescription for Xanax but not the marijuana wax.  His marijuana use probably preceded the anxiety, since marijuana is known to cause anxiety.)

Lori Robinson stated: “Now that we have medicinal marijuana in 24 states, why is it that the federal government not demanding disclosure of marijuana’s adverse effects on mental health, particularly for those ages 25 and under?”   Recently, Arizona’s governor signed a law stating that medical marijuana dispensaries must post prominent signs warning pregnant and breastfeeding women not to use.

She added, “I wish I believed this was more about compassion, but I don’t.   More likely it’s about the money.”

It should be noted that the marijuana industry donates heavily to state legislators with the hope of getting state-by-state medical marijuana in advance of legalization, using Colorado as a model.  If there is a silver lining in Pennsylvania’s program, it is that smoked forms of marijuana are banned.  However, this program will allow for vaporized marijuana, and it foolishly added PTSD and autism to allowed conditions that may be treated with marijuana.

We believe that presidential candidate Bernie Sanders, who supports marijuana legalization, is disingenuous when he criticizes the Koch Brothers and Wall Street bankers while not calling out the fact that George Soros and Peter Lewis have given millions and millions of dollars for the legalization of marijuana.  The marijuana lobby also donates to Congress.

 

American Epilepsy Association Statement on CBD Oils

The following letter was written by Dr. Amy Brooks-Kayal to a state representative in Pennsylvania.  Here is an article where the letter had been published.

March 22, 2015

Dear Representative,

As Pennsylvania considers enacting new cannabis legislation (HB 193), I write to offer the perspective of the American Epilepsy Society (AES), the leading U.S. organization of clinical and research professionals specializing in the treatment and care of people with epilepsy. Continue reading American Epilepsy Association Statement on CBD Oils