Cannabis Oil and Children with Epilepsy 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 Epidiolex, a cannabidiol (CBD) drug that treats seizures in children with Dravet syndrome and Lennox-Gastaut syndrome, may help reduce symptoms in a broader range of doses. CBD oil is one of the latest things to be touted as a miracle cure for seizures. It is a promising treatment that might be right for you.
Cannabis Oil and Children with Epilepsy
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.”
I have recently given birth to a beautiful girl, she has been diagnosed with tubular scoliosis, she had an eeg done at 1.1/2weeks old, the results showed an abnormal reading. The neurologist has now started her on vigabatrin this medication is for anti-seizure/epilepsy however the side effects are severe. Can lead to loss of vision, blurred vision, confusion, depression, diplopia, fatigue, weight gain, abnormal gait, ataxia, cough, diarrhea, drowsiness, memory impairment, tremor, irritability, and pharyngolaryngeal pain, abnormality in thinking, asthenia, depressed mood, dysmenorrhea, erectile dysfunction, eye pain, muscle twitching, paresthesia, peripheral edema, sinus headache, abnormal behavior, abnormal sensory symptoms, anemia, back pain, bronchitis, chest pain, constipation, fever, hypoesthesia, hyporeflexia, lethargy, myalgia, nervousness, nystagmus disorder, peripheral neuropathy, sedated state, toothache, upper abdominal pain, vertigo, malaise, abnormal dreams, bruise, and increased appetite These are alot of side effects for a newborn to possibly endure. I need some alternative as she is scheduled for monthly eeg scans with the neurologist. How do I go about seeking cannabis oil for my child. I don’t want her to end up blind due to this current medication.
Dr Lawson predominantly works at the Sydney Childrens Hospital in Randwick. I believe he also consults at Canberra and Wagga Wagga. If you phone (02) 9382 1658 they can provide you with more details.
can some one help me with Dr. Lawson’s Number on seizures. My daughter has suffered seizures for 11 years and still suffering. my mail is: [email protected]
27 January 2019
My best friend’s son has seizures. He starts to stare off and then his seizure begins. The seizures didn’t start until he got his first set off vaccinations. Before then he was fine. He just got his second round of vaccinations so he can start daycare. He just turned 1 in October. After he got his second round of vaccinations, he had a real bad seizure where they air lifted him to Duke’ s children hospital in North Carolina. He coded 3 times while he was there and was put on a breathing machine because he could no longer breathe on his on. All the doctors are doing is keep giving different kinds of medicine or upping the dosage which does not work. He is my God son and we need help. The doctors say he is too young to try and oil or anything such as. We need help
Tracy Van Eyk
20 January 2019
My son has been taking seizures a lot over the last 12 months they keep upping his medication we are very interested in trying the oil how do we go about it please ,
31 December 2018
Hi. I am looking contact details for Dr Lawson. If anybody got his email I’d please send me. My email is [email protected]
07 September 2018
Hi my names jeffrey my daughter suffers from epilepsy and docs have her on multiple meds and nothing is working at this point i want to try cbd oil which 1 is best for her she is 5yrs old
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.
Hi. I am looking contact details for Dr Lawson. If anybody got his email I’d please send me. My email is [email protected]
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.
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 [email protected] 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.
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 [email protected]
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.
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 [email protected]
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.
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.
CBD Medication Reduces Seizures in Children on Multiple Anti-Epileptic Drugs, Researchers Find
New study supports possible lower dosing levels of FDA-approved drug derived from cannabis for difficult-to-treat type of epilepsy.
Everyday Health Archive
The cannabidiol (CBD) drug Epidiolex — already approved by the U.S. Food and Drug Administration (FDA) to treat seizures in children caused by Dravet syndrome and Lennox-Gastaut syndrome — may now help reduce symptoms in a broader range of doses.
New research published March 2, 2020, in the journal JAMA Neurology confirmed prior study outcomes demonstrating the effectiveness of this oral medication for Dravet syndrome at a dose of 20 milligrams per kilogram (mg/kg) per day. (The drug, which comes in a sesame oil with strawberry flavoring, is given according to a child’s weight.)
Results Show That a Lower Dose Is Safe, Effective
“This is the first study, however, to show efficacy and safety for a 10 mg/kg a day dose in these patients,” says lead investigator Ian Miller, MD, director of the epilepsy and neurophysiology program at Nicklaus Children’s Hospital in Miami. “It will not change the FDA indication, but will inform physicians regarding optimizing the benefit-risk ratio for patients.”
The trial, which included 199 patients ages 2 to 18 with a confirmed diagnosis of Dravet syndrome, showed that the 10-mg dose may be just as effective as the 20-mg dose.
Scientists discovered that those taking 10 mg experienced seizure reductions of 49 percent compared with 46 percent reduction in those taking 20 mg and a 27 percent reduction for those on placebo.
Stephen Schultz, the vice president of investor relations for GW Pharmaceuticals, which makes Epidiolex, indicates that the results should give physicians greater flexibility when it comes to dosing. “For some patients, the 10 [mg] will work well, but others will be more resistant and will need more,” he says.
Notoriously Resistant to Treatment
Dravet syndrome is a rare, catastrophic form of lifelong epilepsy that affects about 1 in every 15,700 individuals in the United States, according to the Dravet Syndrome Foundation.
This severe epilepsy can bring on frequent, prolonged seizures often triggered by high body temperature (hyperthermia), as well as developmental delay, speech impairment, ataxia (a degenerative disease of the nervous system), hypotonia (decreased muscle tone), sleep disturbances, and other health problems.
So far, the condition has been extremely challenging to treat, with response to medication being inadequate. The participants in this investigation were taking multiple anticonvulsants, such as levetiracetam, divalproex, topiramate, zonisamide, ethosuximide, and clobazam.
“Even with these currently available treatments, only about 10 percent of patients with Dravet syndrome achieve adequate seizure control,” says Dr. Miller.
A report published in September 2019 the journal CNS Drugs, however, highlighted new therapies — including stiripentol, fenfluramine, and cannabidiol — which have produced promising results in reducing convulsive seizure frequency.
Greenlighted by the FDA for Dravet syndrome treatment in June of 2018, Epidiolex is the first prescription pharmaceutical formulation of a highly purified, plant-derived cannabinoid — but without the “high” associated with marijuana.
“This study is not necessarily providing new information but providing further evidence of the usefulness of Epidiolex in Dravet Syndrome,” says Melissa L Bernbaum, MD, director of neurology at Northwell Health’s Huntington Hospital in Huntington, New York.
She adds that, while there may be a stigma attached to cannabidiol because of the medication’s connection with marijuana, she does not have any patients with such concerns at her practice and in fact, many are interested in “medical marijuana.”
“Parents actually tend to have a positive emotional reaction to the fact that the medication is produced from a plant and then purified, rather than being synthesized in a test tube,” says Miller.
With the benefits of cannabidiol being scientifically proven, GW Pharmaceuticals is seeking the FDA’s thumbs-up for Sativex (naximbols), a spasticity treatment for patients with multiple sclerosis that contains two chemical extracts derived from the cannabis plant. The product is currently approved in 29 countries outside the United States, according to the company.
The company is also exploring cannabinoid-based therapies for autism, spinal cord spasticity, schizophrenia, and post-traumatic stress disorder (PTSD).
Staying Alert to Possible Side Effects
Overall, Epidiolex has a favorable safety profile with notable side effects being the risk of liver enzyme elevations, appetite changes, diarrhea, somnolence (sleepiness), pyrexia (fever), and fatigue.
“It is also important to note potential interactions with other anti-seizure medication,” says Dr. Bernbaum. “Certain combinations may be more likely to cause sedation.”
Schultz stresses that dosing above 25 mg did not significantly improve seizure response, but did increase the number of adverse events. “Given that, it makes sense for the top end of dosing to be around 25 [mg],” he says.
At this time, the sticker cost for the drug is not inexpensive. On average, the price for Epidiolex in the United States for the first year of use was in the $32,000 per year range, according to Schultz, who adds that the out-of-pocket copay may be no more than $25 per patient.
Because dosing depends on patient’s weight, he points out that the product will cost less for young lighter patients and more for older heavier patients.
“Physicians and patients desired a pharmaceutical formulation of a cannabinoid that has gone through proper clinical trials and been tested for safety and efficacy,” says Schultz. “With Epidiolex, they have one that is exactly the same every time that it is taken, and because it is FDA-approved, it will be paid for by insurance.”
CBD for Seizures- Use, Effectiveness, Side Effects, and More
If you have seizures or are the parent of a child who has seizures, then you are probably constantly on the lookout for ways to control seizures with as few side effects as possible. CBD oil is one of the latest things to be touted as a miracle cure for seizures. While its effects are not the miracle cure some people suggest, it is a promising treatment that might be right for you.
What is CBD?
CBD is short for cannabidiol, which is a chemical found in marijuana. It is not the same as tetrahydrocannabinol (THC), the chemical in cannabis that is responsible for the “high” feeling people get from marijuana.
What does CBD do?
Well, people make many claims about what CBD can do. Not all of them have been tested and verified. However, there is support for claims that CBD may help reduce pain and anxiety.
Does CBD help seizures?
The short answer is yes. CBD can help prevent some types of seizures in some people and animals. Clinical trials have demonstrated a significant reduction in seizures for people taking CBD to treat Lennox-Gastaut, Dravet syndrome, or tuberous sclerosis complex. Research in other areas is still in early stages, but there are indications that CBD may help prevent other types of seizure or increase the efficacy of other antiepileptic medications. Early clinical trials suggest that CBD may dramatically reduce seizures in people with CDKL5 deficiency disorder, Aicardi syndrome, Doose syndrome, and Dup15q syndrome. In addition, CBD appeared to retain its efficacy over the length of the clinical trial.
How does CBD help prevent seizures?
That is a wonderful question, but, unfortunately, the research simply is not sufficient to give a definitive answer. What we do know is that bodies contain natural neurotransmitters and receptors known as the endocannabinoid system. CBD is believed to interact with that system, which is believed to influence a range of bodily functions and systems including immune response, appetite, pain, and sleep.
Is CBD approved by the FDA to treat seizures?
Yes, but not all CBD oils and not all types of seizures. Currently, Epidolex, a prescription form of CBD, is approved to treat seizures caused by Lennox-Gastaut, Dravet syndrome, and tuberous sclerosis complex.
Does CBD interact with other seizure medications?
Yes. We know that CBD interacts with brivaracetam, clobazam, eslicarbazepine, stiripentol, rufinamide, topirimate, valproic acid, and zonisamide. It also possible that it interacts with other antiepileptics, and as research continues, we should have a better idea of other possible interactions.
How do I use CBD or CBD oil to treat seizures?
If you have a seizure disorder, you should be seeing a neurologist for treatment. It is very important to discuss whether you should use CBD oil with your neurologist. While it is generally safe to use, there is always a risk of potential drug interactions. In addition, some people actually experience an increase in seizures when they use CBD. Therefore, just like with any antiepileptic drugs, you want to have a professional monitoring your use of CBD.
What is an average clinical use of CBD to treat seizures?
The starting dose for CBD is 2.5 mg/kg of Epidolex, two times a day. A normal maintenance dosage is 5mg/kg twice daily, and the maximum dosage is 10mg/kg twice daily. As with other antiseizure medications, it should be introduced or stopped gradually, as sudden changes can increase seizure activity.
What are the potential side effects of CBD when used to treat seizures?
Whether used alone or with other seizure medications, there are some potential side effects of using CBD to treat seizures. It can lead to an increase in suicidal thoughts or behaviors, sleepiness, drowsiness, diarrhea, and loss of appetite. While most of these side effects are inconvenient, interactions can also cause liver damage.
Can CBD increase my seizures?
This is a tricky question to answer. Anecdotally, it seems clear that some percentage of people will have an increase in the number of seizures in response to using CBD. However, why is not so clear. Research seems to suggest that people who use commercial CBD products are likely to see an increase in seizures, while people using prescription CBD are likely to see a reduction in seizures. The speculation is that commercial products are not pure CBD, but are tainted with THC, which is known to be a potential seizure trigger.
Can I use over-the-counter CBD to treat epilepsy?
The problem with OTC CBD is that it is not regulated by the FDA. This makes it impossible to know what dose you would be getting, if the product is contaminated with impurities, or if it even is CBD. If you want to explore using CBD to treat seizures, talk with your doctor about adding Epidolex, an FDA regulated product that eliminates the specific risks posed by an OTC product, to your treatment plan.