Tag Archives: Children’s Hospital Colorado

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.

 

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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

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Megan’s Story

by Beth Larsen  The Father of this girl works with my husband. I still don’t know why people try drugs……

This is Megan’s story to the best of my knowledge and as told to me by her amazing Dad…

Our beautiful Megan just graduated from Sand Creek High School in May where she was a cheerleader, ran track and danced with the step team. She was eagerly awaiting her first year at UNC this fall. On Thursday, July 2, 2015, she was spending the night at her friend’s house along with two other girls. At some point, one of the girls left and came back with a drug called “Molly.” Continue reading Megan’s Story

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Edible Pot Tricks Children

In Colorado and California, marijuana entrepreneurs have used deceptive packaging which is enticing to youngsters.  Many candies look like children’s favorites, such Reese’s Peanut Butter Cups and Gummy Bears.  At least nine incidences of marijuana poisoning in children have occurred in Colorado this year.  The problem of pot candy is expanding to other states, as the word is out and a “ganja-preneurial” spirit spreads.

There’s a huge business behind pushing cookies, candies and edible forms of marijuana, considered to be safer than smoked or vaporized pot, but these products take longer to have an effect and often lead people to ingest larger amounts to get their “high.” Continue reading Edible Pot Tricks Children

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