Cannabis Oil and Children with Epilepsy

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Submitted by Carol Ireland

I know there was a great deal of upset, especially amongst ‘epilepsy parents’, following comments made in an ABC Brisbane television news item on the evening of 19 September. The segment covered the story of a father who is pleading with the Queensland Government to allow his 8 year old daughter, who has a regressive neurological disorder that causes chronic multiple seizures, access to medicinal cannabis oil while she is in hospital. Essentially a comment made on behalf of the medical sector caused the upset: “children in particular have presented in hospitals with comas and died from cannabis oil”. Epilepsy Action has done some homework on this topic and I share with you now the body of the letter that I have written to the Australian Medical Association.

“I refer to a news article on ABC television on the evening of 19 September 2016 about medicinal cannabis and children with epilepsy, in particular the Peek family. Comments made by you in this interview have caused anger, concern and in some cases fear within the epilepsy community. I write this letter in the hope that it serves to explain the reasons for this and to seek your assistance in ameliorating the situation.

In my role as CEO and Managing Director of Epilepsy Action Australia I have had significant contact with many families faced with difficult decisions in managing their child’s unrelenting and debilitating seizures as a result of epilepsy. In often dire circumstances, some parents in Australia have been willing to try anything to help reduce the severity and frequency of their child’s seizures and improve their quality of life. Parents, who hoped that their child might respond to cannabis oil, have desperately sought access to any source of ‘medicinal cannabis’ oil or tincture they could find, with the uncomfortable knowledge that it was considered an illicit drug in Australia.

Having presented at the Senate Inquiry into the Regulator of Medicinal Cannabis Bill 2014, sitting on the Steering Committee for the NSW Clinical Trials, acting as a co-investigator in the PELICAN project (NSW and QLD) and serving on the Board of the Lambert Initiative at Sydney University, I fully support legal and medical pathways undertaken to provide medically prescribed, quality controlled medicinal cannabis to people with epilepsy, however quality research and changes to existing laws takes time. Sadly, time unfortunately is not something that many of these children have.

We understand the legal issue: While medicinal cannabis (or marijuana) use was lawful in Australia until the 1950s, cannabis cultivation and use is now illegal in all Australian jurisdictions for any purpose, even though the international drug treaties to which we are party permit the medical and scientific use of drugs whose recreational use is prohibited. Obviously Australians benefit from the medical use of drugs such as morphine, ketamine, cocaine and amphetamine, despite their recreational use being prohibited.

We also understand that human clinical trials for CBD and epilepsy are in early phases, and that while CBD has been examined as a potential anti-epileptic in humans, these early studies have not been followed up with larger and more convincing clinical trials over a longer period.

On the other hand, we understand from social media and other sources that a number of consumers (parents) in Australia are gaining access to medicinal cannabis to treat seizures. Given the catastrophic and debilitating nature of their children’s epilepsy conditions it is not difficult to understand their desperation. These parents report immense improvement in the severity and frequency of their children’s seizures and overall quality of life. However EAA is of course concerned that these consumers may be using home-grown and black market cannabis of uncertain medicinal quality, and these desperate parents are breaking the law.

We understand that there are inherent risks in use of unregulated cannabinoid based products however if there was legal laboratory testing available, the risks of potential contaminates would be avoided and parents would be aware of the cannabinoid ratios and terpene profiles of the product they are using. This would indeed provide sensible and effective medium term risk mitigation.

I want to refer specifically to your comments in the television interview that “children in particular have presented in hospitals with comas and died from cannabis oil”. If there had been a child death in Australia related to cannabinoid intoxication a Coroner’s inquest would have been required to investigate the death. We cannot find any such listing.

I understand that you spoke yesterday to a medicinal cannabis advocate and that you stated that your information came from Colorado. From our research, I must assume that your comments in fact relate to the accidental ingestion of marijuana edibles (usually owned by the parent or other adult) rather than the children being administered medicinal cannabis oil for specific health conditions. This is more an issue of labelling, child proof packaging and adults being responsible in storing their product.

I believe it would be appropriate, and indeed highly appreciated by parents in the epilepsy community, if you would retract the statement made, or at least provide further detail and accurate context for your statement. I offer the assistance of my organisation to assist in any way possible with education and support in this situation.

Finally, I would like to refer you to an article in the Medical Journal of Australia by David G Pennington (Med J Aust 2015; 202 (2): 74-75) titled “Australia is behind the times on the medical use of cannabis”. It makes for interesting reading on this difficult topic.”

Comments:

Jay

22 May 2018

The health care professionals were out of line when they wanted blood tests because they wanted the parents to commit to a plan of care when there were already other health care providers and professionals with years of experience already being consulted by the family. They acted like they were abusing that little girl when in fact the CBD was an effective treatment. Shame on those who raised a fuss over a responsable couple who were loving and providing an effective treatment for their little girl who could live a full life with the use of the CBD oil under the direction of a professional. I'm so sorry that the family went through this. Prayers.

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Comments:

Raj

04 May 2018

Hi. I am looking contact details for Dr Lawson. If anybody got his email I’d please send me. My email is neerajf16@gmail.com

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Comments:

Cid

23 April 2018

I would encourage you not to believe the media or the medical industry on anything. They are all lies until proven. How does someone die taking cannabis oil? You are more likely to die from eating an apple sprayed with poison, or drugs the medical industry will supply and tell you it will help. Big business. Of course they dont want you to feel there are other cures and prevention, like cbd oil. And most of all NEVER trust the media.

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Comments:

Sandra Reuben

30 March 2018

CANNABIS CBD OIL CURED MY SEIZURES. I have seizures and i have been waking up in the emergency room every 2 to 3 months for the last 10 years. I was started on Levetiracetam (Keppra) after about 3 seizures, 250mg didn't work so it was increased to 500mg and I started to seriously plan my suicide, that increased the moody irritability to the point where if something came up with somebody I"d go off on them with intentions to cause harm, after I got out of the back seat of my sisters car in heavy traffic to explain to the driver behind us we weren't going anywhere either but we could discuss this further after he got out of his car they started me on lamotrigine and vimpat and took me off keppra. My gran mals are always when I'm sleeping at about 5 am. With the change in medicine I started waking up during the seizure unable to breathe. My neurologist told me that shows the medication is starting to work and I am getting closer to ending my seizures. When the paramedics show up it's a wrestling match to get me on the gurney and I have lost my appetite since this has all unraveled. Nothing seems to be helping. I feel like my doctors don't even know what to do or say to me anymore. Feeling hopeless. I heard about cannabis CBD oil and I decided to try it. I bought the cannabis oil from Medicinal Marijuana Resources by contacting them through their email info@medicinalmarijuanaresources.com and I started using the cannabis oil as prescribed and within few weeks of using the cannabis CBD oil, there was a lot of good changes and I felt better. I used the cannabis oil to cure my seizures completely. I am healthy and I do not suffer from seizures. Seizures patients out there should try cannabis CBD oil and you will see the result.

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Comments:

Reta

27 February 2018

Hi everyone. My daughter was diagnosed with JME in September 2017. she had seizures every 2-3 weeks. The neurologist put her on Eplim, she started gaining weight fast and she was still having seizures 2-3 weeks a part, they changed her med to keppra, once she started keppra she started having seizures frequently 10 days to a week apart some clusters. At this point they added clopazam she was still having seizures. They changed keppra to tomarmax. OMG she had every side effect that was listed for this med as well as having seizures every night for the pas 10 days. Doctors they just want to load you with medication and see if it works. None of this medication worked for my daughter in fact I think made her condition worse. I will try anything at this point to reduce or stop the seizure. Is there a contact detail for Dr Lawson? How can I get in contact with him? Does anyone know how we can register for CBD oil trial in Australia? My email address is orit.sabit@gmail.com

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Comments:

ali sydney

18 January 2018

My son is 5 years old. He suffered from myoclonic seizure for over a year, uncontrollably with meds. When he has one it starts where he rolls his eyes back or his eyes are staring off to nowhere, seeing he arms jerk every single night His breathing gets very shallow and his heart rate speeds up, now his not sleeping. I don't think there's any changing he started experiencing one horrible serious side effect of the medicine. I could not get an appointment with a neurologist for 5 weeks. I was filled with worry. Thank God for a wonderful doctor, i read a testimonial of someone on a website her daughter was cure from seizure using herbal medicine. I called the number that was retain at the website, i explain to doctor Lawson about my son symptom and I ordered his medicine. my son used the medicine for month now, his health has change the meds worked without any trace of side effects. For over 1 year now seizure free if you don't have this herbal product it is available. It works, wonderfully.

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Comments:

Raj

14 December 2017

Hi Mark Clara this raj my son had the same problem the one you discribed about your daughter. I thinking to use some herbal medicine for my son problem. But I need some guidance. Could you please send me your email I’d so I can contact you or some other resources which can help me. My email I’d is neerajf16@gmail.com

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Comments:

mark clara

19 October 2017

My daughter was diagnosed with Epilepsy. The neurologist was very confident about the diagnosis based, my Daughter had an EEG (no idea if it showed anything; we were tired and may have misunderstood what he said about that). MRI was negative for problems. For the past 4 months or so, I have seen weekly occurrences, making strange faces (this involved cheek twitching and lip quivering). We did not realize it could be a serious problem until she had an obvious seizure (simple partial) last week. What is troubling about my daughter condition is that we have seen many daytime seizures, and that recently the seizures seem to cluster together. No idea if there are seizures occurring at night. We were given a prescription for Kapra, but are still weighing the risk / rewards of giving the medication to a toddler. After returning from the hospital, my daughter experienced a round a vomiting lasting from 3 AM to 11 AM, followed by additional vomiting the following morning at around 2 AM. Nothing sense then. She has not had an appetite, is drinking fine, and otherwise appears healthy. I read a lot of blogs where people who shared their testimonies kept mentioning Anti-seizure Herbal medication. I searched for a website I just followed the email address of Doctor Lawson that was shared on these testimonies; I got lucky when I got a reply from Dr. Lawson Bryan. I followed his instruction, used Herbal Medicine in less than 2 months, my daughter seizures reduced drastically. Within a period of 5 months, my daughter was cured. I went back to my neurologist, where my daughter checked up and marked epilepsy free.

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Comments:

AlysonTdj

26 September 2017

Hi everybody! Recently I have been dealing with a lot of hardships. Friends and doctors keep telling me I should consider taking pills, so I may as well source and see how it goes. Problem is, I haven't taken it for a while, and don't wanna get back to it, we'll see how it goes.

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