epilepsy

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Letter from American Epilpsey Society Charlotte's Web, epilepsy, Legislation, Colorado, Studies, Research

A study by a team from Children's Hospital Colorado that was presented during the AES Annual Meeting in December 2014 and has recently been accepted for publication in the journal Epilepsy & Behavior, found that artisanal "high CBD" oils resulted in no significant reduction in seizures in the majority of patients and in those for whom the parents reported improvements, these improvements were not associated with improvement in electroencephalograms (EEGs), the gold standard monitoring test for people with epilepsy.

 

Additionally, in 20% 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, but they are the reality of 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.

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American Epilepsy Society Statements american epiliepsy society, epilepsy

The American Epilepsy Society is very sympathetic to the desperation of parents whose children have severe, treatment-resistant epilepsy. Our members, face these families daily at the clinic and at their bedside and are highly attuned to the need for compassionate use of promising new therapies in appropriate and controlled circumstances. AES urges all people touched by epilepsy to consult with an epilepsy specialist and explore the many existing treatment options, so that they can make informed decisions with their specialist that weighs the risks and benefits of the different treatment options. 

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Is Medical Marijuana Right for Kids With Chronic Illness? Charlotte's Web, epilepsy, legalization, Children, chronic

 “It is important to know that legalizing marijuana would not mean greater access to potentially effective treatment for children and adults with a medical illness such as epilepsy. Cannabidiol, or CBD, is not at all marijuana.”

CBD is not medical marijuana. CBD does not get anyone high nor does it increase appetite. It may be beneficial in treating children with rare forms of epilepsy, often difficult to control with medication or other available treatments, but it does not work for everyone with seizures.

“The stories of kids having fewer seizures described in the media are heartwarming and can possibly be of some benefit – just like many other medications available to treat seizures,” Dr. Patel adds.

What are the possible side effects?
CBD can cause nausea, diarrhea, or worse, affect the liver.

Dr. Patel states, “There is nothing natural about marijuana and its components. It is broken down in a person’s liver, similar to many other medications. It has interactions with other medications and is still not fully understood. If further studies show that CBD is safe and effective, it will be sent to the FDA for official approval. If the FDA approves this medication, it will be available in the form of a prescription and no laws will need to be changed.”

“Legalization would make our jobs as medical providers more difficult as we will not know what changing, non-tested preparations a child may be getting. I understand that parents are desperate and want to help their children, however, it is dangerous to give a child or patient a product unless it has been studied properly and is the same consistent product each time.” If the ongoing trials show that Epidiolex is safe and effective, then all people can have access to it through a prescription and know that it has been properly tested and is consistent each month. Medical providers will know how to dose it and it will be regulated by the FDA.

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Liquid Medical Marijuana Shows Promise for Epilepsy epilepsy, gw pharm, Epidiolex

Among the 137 people who completed the study, the number of seizures fell by an average of 54 percent, according to a team led by Dr. Orrin Devinsky, of New York University Langone Comprehensive Epilepsy Center in New York City.
 Keep in mind that Epidiolex is VERY different than the so-called low THC strains of marijuana (also known as Charlotte’s Web) that are being grown and sold in several states.  Unlike Epidiolex, the strains of marijuana are  not cloned and the end products vary widely.  Most importantly, these strains contain varying levels of THC whereas Epidiolex is virtually pure CBD.

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Medical Cannabis: Early Test Results Of Epidiolex Show Promise For Epilepsy Patients epilepsy, Epidiolex, gw pharm

.03%  or  93,200 children in the U.S. have severe forms of epilepsy and do not respond to current treatments of the population 320,000,000.  
 
Charlotte's Web results....Dr. Chapman and colleagues at Colorado Children’s Hospital and the University of Colorado reviewed cases of 58 children with severe epilepsy who came into their care while using artisanal CBD. Parents reported seizure reduction of 50% or more in only one-third of patients, but except for two children there was no improvement in their EEGs. Adverse effects occurred in 47% of patients: 21% experienced increased or new seizures; 10% suffered developmental regression with one patient needing intubation; one patient died.  

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Liquid Medical Marijuana Shows Promise for Epilepsy Charlotte's Web, Epidiolex, epilepsy

Among the 137 people who completed the study, the number of seizures fell by an average of 54 percent, according to a team led by Dr. Orrin Devinsky, of New York University Langone Comprehensive Epilepsy Center in New York City.
Keep in mind that Epidiolex is VERY different than the so-called low THC strains of marijuana (also known as Charlotte’s Web) that are being grown and sold in several states.  Unlike Epidiolex, the strains of marijuana are  not cloned and the end products vary widely.  Most importantly, these strains contain varying levels of THC whereas Epidiolex is virtually pure CBD.

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Parents May Overestimate Marijuana's Effects on Kids' Seizures Charlotte's Web, epilepsy

But these results should be taken with a grain of salt, Hussain said. "This is generally a pretty desperate group of patients and parents, and I think they are highly invested in the belief and the hope that these cannabis extracts are truly effective," he said.

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Epilepsy Studies epilepsy, Charlotte's Web, Death 8
GW Pharmaceuticals Closes U.S. Public Offering; Cannabis-Based Medicines Progress Charlotte's Web, gw pharm, epilepsy 9
Epilepsy experts call for more research into medical marijuana epilepsy, Research 10
Comes Now Epidiolex™ (FDA approves IND studies of CBD) Epidiolex, Charlotte's Web, epilepsy, Dr. Guy, gw pharm 11
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