Ten-month-old Kaitlyn Pogson is living with Dravet syndrome, a rare catastrophic form of intractable epilepsy that causes her to go into hour-long seizures every few days. When this happens, Kaitlyn must be rushed to hospital where she’s administered anti-seizure medication that has little impact and often produces side effects, such as reduced appetite.
Her parents, Barry and Shannon, say there’s hope to end the nightmare their daughter lives with, but they need Health Canada to approve a substance derived from the cannabis plant for clinical trials.
It’s for this reason the Pogsons have launched an online petition aimed at making Health Canada’s office of controlled substances aware of the benefits of Cannabidiol (CBD) on children who are living with a seizure disorder. https://www.change.org/en-CA/petitions/make-cannabidiol-cbd-available-in-canada
Specifically, the petition has three main objectives: to encourage Health Canada to allow the specific strains of cannabis plants needed for CBD production to be imported from the U.S., to allow medical trials to be conducted in Canada, and to expedite the process of accessing CBD.
CBD comes from the flower of the cannabis plant, which is causing stumbling blocks for those advocating for its study in clinical trials. CBD is not legal in Canada, nor is it legal in the U.S. at the federal level.
The substance is produced by soaking the flower in alcohol, which is then boiled off. Olive or sesame seed oil is then added to the remaining residue. The CBD oil mixture can then be administered by stirring it into food.
Barry says CBD treatment could have a huge positive impact on the quality of life for children and adults with seizure disorders.
He says he remains hopeful about CBD eventually becoming a widespread intervention for children with seizure disorders. He points to Dr. Orrin Devinsky of New York University receiving Federal Drug Administration approval to conduct a study on the safety of CBD in children living with a seizure disorder as hope for what’s around the corner.
Epilepsy Ontario executive director Rozalyn Werner-Arcé says that while the organization is not endorsing CBD as a treatment for catastrophic seizures, “as the voice of epilepsy in this province, we believe Epilepsy Ontario has a responsibility to inform people about new research and treatments so that they can make informed decisions with their health-care provider. We do this through stories such as these and through information on topics such as CBD on our website.”
Writer: Deron Hamel
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* If you wish to reprint this story, please include following notice: “This story originally appeared on the Epilepsy Ontario website.”
A doctor’s referral will get you to a Cannibas clinic (cannibasclinics.ca) for an assessment. After age 25, no referral is needed, you can get your own appointment and will have to complete a form for them to obtain access to your medical records. I have started my child (he’s 25 yrs. his neurologist would not do the referral) on a high CBD strain of Cannibas (Avidekal strain). He does not smoke it, it is ingested…..this is day three and we have seen no difference, he has actually had three seizures since starting. Dosage needs to be tweeked which we are doing now. I too was ‘wowed’ by all the stories about the miracle’s in some kids…but there was very little out there that I found about the one’s it didn’t help. Losing faith that this will help my son’s seizures, but not giving up!
I’ve had simple partials for the past 20yrs. I getting it from an accident when I was28yrs old so I’ve grew up with it. I’ve tried about 9 drugs and nothing could control my seizures 100% and the side-effects really has robbed me from a life I need just to take proper care of myself. I’m not a fan of marijuana but I got interested in researching of the medical part of it. I found that it’s the CBD that’s the medical part and doesn’t affect the behaviour or moods of those that use it why it’s illegal? I know that they all have THC within them but if the level of it is less of say 10% then it should be legal. It is a drug and should be able to get it from a Pharmacy. They can use Morphine in the hospitals why can’t they use CBD too as that’s a narcotic and is much less addictive. This should be national wide, not provincial, and can travel with it.
Hi,
I just wanna leave a note. My company is called Cannabis Consulting (cannabisconsulting.ca) and its based out of Toronto ON. I specialize in CBD products with little to no THC that are non psychoactive and lab tested & made in BC.
If you have any questions or concerns please contact me and I’ll help you as much as I can. I work with dispensaries in BC and in Toronto area.
My 21yr old son has been dealing with daily seizures since the age of 12.Prior to this he had rhabdomyosaroma (from age 2)that metastasized to the brain.We were told at that time that he was terminal. We traveled to a clinic in San Diego for immunotherapy and today he is healed from the cancer. This was about 15 years ago. The seizures were brought on by scar tissue left from the brain surgery. Nothing so far has helped. Not medicine, not diet, not reiki, not more surgery. Nothing. The strains of cbd in Canada are too low(14% max) and the method of administering is not a healthy and positive option(smoking or vaporizing).This disease is so debilitating and so frustrating.No one can understand the despair of the parents in trying to help, cope and heal their child.
i have now been invited to pick up the Charlotte’s web oil in Colorado but have been advised by the enforcement section of Health Canada that-if I try to cross the border with the oil that I may be arrested! I suppose that i may have to weigh this risk against the one of having to perform cpr on my son again hoping that he makes it back from another devastating episode. Any lawyers out there willing to bring this to the Supreme court of Canada? Epilepsy patients in Canada need this oil!!!
My daughter has epilepsy as well as a rare mitochondrial disorder. She is now 30 and over the last year and a half has spent more time in the hospital than out. She is on so much medication now that she sleeps all the time. When she has seizures she will go into a comatose state for over 24 hours. I don’t take her to the hospital anymore, I just look after her at home as even the specialists can’t seem to help. I am now changing her diet to try and see if that helps but what I really want is to get my hands on CBD. Nobody understands what we are going through unless you are going through it yourself. Please Canada get with the program and help us help our children. Do you know how it feels to know there is something out there that could help yet it is unreachable!
My daughter has epilepsy as well as a rare mitochondrial disorder. She is now 30 and over the last year and a half has spent more time in the hospital than out. She is on so much medication now that she sleeps all the time. When she has seizures she will go into a comatose state for over 24 hours. I don’t take her to the hospital anymore, I just look after her at home as even the specialists can’t seem to help. I am now changing her diet to try and see if that helps but what I really want is to get my hands on CBD. Nobody understands what we are going through unless you are going through it yourself. Please Canada get with the program and help us help our children. Do you know how it feels to know there is something out there that could help yet it is unreachable!
My daughter has epilepsy as well as a rare mitochondrial disorder. She is now 30 and over the last year and a half has spent more time in the hospital than out. She is on so much medication now that she sleeps all the time. When she has seizures she will go into a comatose state for over 24 hours. I don’t take her to the hospital anymore, I just look after her at home as even the specialists can’t seem to help. I am now changing her diet to try and see if that helps but what I really want is to get my hands on CBD. Nobody understands what we are going through unless you are going through it yourself. Please Canada get with the program and help us help our children. Do you know how it feels to know there is something out there that could help yet it is unreachable!
Disappointed in our government sloth-like movement on this.
Why aren’t Ontario’s sons and daughters deserving enough to try CDB?
BTW, reading this article on a lucky Oregon child’s experience with CDB oil led me to this page… http://www.katu.com/news/local/Medical-marijuana-growers-donate-product-for-8-year-old-boys-treatment-283115851.html
Disappointed in our government sloth-like movement on this.
Why aren’t Ontario’s sons and daughters deserving enough to try CDB?
BTW, reading this article on a lucky Oregon child’s experience with CDB oil led me to this page… http://www.katu.com/news/local/Medical-marijuana-growers-donate-product-for-8-year-old-boys-treatment-283115851.html
Disappointed in our government sloth-like movement on this.
Why aren’t Ontario’s sons and daughters deserving enough to try CDB?
BTW, reading this article on a lucky Oregon child’s experience with CDB oil led me to this page… http://www.katu.com/news/local/Medical-marijuana-growers-donate-product-for-8-year-old-boys-treatment-283115851.html
My 1 year old daughter has cerebral palsy and suffers from myclonic seizures. Before taking clonazepam she was much more alert and active. Since starting clonazepam she has become a rag doll and has lost her appettite significantly. There is not one cell in my body that believes a benzodiapene is safer than a whole plant cbd rich extract. We need options for parents now, wake up health Canada and stop making us feed our kids poison as medicine. If it doesn’t work, it doesn’t work. But at least give us a chance to try in a legal manner with an appropriately quality controlled extract. I believe that the whole plant synergy is important for medicinal effectiveness. Unfortunately I believe health Canada will want to investigate isolated pharma cannabinoids first which I believe will down play the medical significance of the plant. But what do I know, there is already a product called epidiolex that is made by GW pharmaceuticals being tweeted in the US that may prove to be effective. I don’t see why it can’t be tested here as well. As a side note with all this attention on cbd should not take away from other readily available medicinally constituients in already widely available strains, namely THC-A. The work of Dave Mapes in Australia is demonstrating that any high THC strain can be used to make a medically effective tincture. Thc-a is not psychoactive unless decarboxylated by heat to form THC. Charelottes web is not the be all end all the producers are alleging it is. So let’s not be hasty demonizing THC so quickly.
My 1 year old daughter has cerebral palsy and suffers from myclonic seizures. Before taking clonazepam she was much more alert and active. Since starting clonazepam she has become a rag doll and has lost her appettite significantly. There is not one cell in my body that believes a benzodiapene is safer than a whole plant cbd rich extract. We need options for parents now, wake up health Canada and stop making us feed our kids poison as medicine. If it doesn’t work, it doesn’t work. But at least give us a chance to try in a legal manner with an appropriately quality controlled extract. I believe that the whole plant synergy is important for medicinal effectiveness. Unfortunately I believe health Canada will want to investigate isolated pharma cannabinoids first which I believe will down play the medical significance of the plant. But what do I know, there is already a product called epidiolex that is made by GW pharmaceuticals being tweeted in the US that may prove to be effective. I don’t see why it can’t be tested here as well. As a side note with all this attention on cbd should not take away from other readily available medicinally constituients in already widely available strains, namely THC-A. The work of Dave Mapes in Australia is demonstrating that any high THC strain can be used to make a medically effective tincture. Thc-a is not psychoactive unless decarboxylated by heat to form THC. Charelottes web is not the be all end all the producers are alleging it is. So let’s not be hasty demonizing THC so quickly.
My 1 year old daughter has cerebral palsy and suffers from myclonic seizures. Before taking clonazepam she was much more alert and active. Since starting clonazepam she has become a rag doll and has lost her appettite significantly. There is not one cell in my body that believes a benzodiapene is safer than a whole plant cbd rich extract. We need options for parents now, wake up health Canada and stop making us feed our kids poison as medicine. If it doesn’t work, it doesn’t work. But at least give us a chance to try in a legal manner with an appropriately quality controlled extract. I believe that the whole plant synergy is important for medicinal effectiveness. Unfortunately I believe health Canada will want to investigate isolated pharma cannabinoids first which I believe will down play the medical significance of the plant. But what do I know, there is already a product called epidiolex that is made by GW pharmaceuticals being tweeted in the US that may prove to be effective. I don’t see why it can’t be tested here as well. As a side note with all this attention on cbd should not take away from other readily available medicinally constituients in already widely available strains, namely THC-A. The work of Dave Mapes in Australia is demonstrating that any high THC strain can be used to make a medically effective tincture. Thc-a is not psychoactive unless decarboxylated by heat to form THC. Charelottes web is not the be all end all the producers are alleging it is. So let’s not be hasty demonizing THC so quickly.
I have suffered with epilepsy for years and I am eager to try cbd. I am disappointed that the treatment is not available yet in Canada.
I have suffered with epilepsy for years and I am eager to try cbd. I am disappointed that the treatment is not available yet in Canada.
I have suffered with epilepsy for years and I am eager to try cbd. I am disappointed that the treatment is not available yet in Canada.
My Daughter Cadence Hope is 8 years old. She has survived (how she is still with us is a miracle) with Intractable Epilepsy since infancy. I watched a video clip of a Father in the U.S.A. PLEA to his government and his president to approve CBD rich marijuana so his son could live and thrive. This boy, Jayden, suffered tremendously with seizures so much so that it brings a grown man to tears with fear that he may very well have to bury his son. What is the hold up? I understand why Marijuana is illegal because of the effect THC has on the body, however it has become apparent that Strains high in CBD and low in THC hold huge potential for a safe and effective therapy for Refractory or Intractable cases of epilepsy. At the very least the anecdotal evidence should be a strong catalyst for a nationwide trial. If CBD is as beneficial as I hope it is it is our governments responsibility to not only legalize it but allow caregivers and users to grow this particular strain, have it tested and then offer support to the grower to assist in preparation of and strength of dosages. I keenly remember not to long ago that some people, prescribed medication for seizures, were informed they could no longer get their medication. For a person with epilepsy, a lapse in availability could mean life or death. It is all the more important to think out of the box when dealing with Intractable Epilepsy because the go-to treatments available to most patients prove ineffective at best. My Husband and I took our Daughter to Mexico for an unproven, “experimental” Adult placental stem cell therapy. We witnessed a great deal of improvement in our Daughter’s health and seizure activity in the year that followed, alas, they effects lasted only a year, her aggressive seizure disorder took over, and we could not afford to return on an annual basis. Cadence’s Dad and I felt confident enough that the treatment had enough therapeutic value that we returned with her for a second round before funds ran out. OHIP does not cover “experimental” treatments so we are back to adjusting a not so perfect ketogenic diet and increasing on a new medication. P.S. Cadence was able to come off of three anticonvulsants and doing well post stem cell. I have seen the potential of Adult placental stem cell therapy first hand and I do believe it’s effects warrant further investigation as a one or twice annual therapy for Intractable forms of epilepsy. Keep in mind “Intractable” means that other attempts to control seizures have failed. A new strain of Medical Marijuana called Avidekel hails from Israel. It contains 15.8 percent CBD and less than 1 % THC. Of the brave parents who have fought tooth and fist to acquire high CBD Marijuana for their epileptic children all seem to have done so out of a desperation I understand well. If there is just one more option available to us, I will take it even if it is labeled “unproven” or “experimental”. That desperate voice in my head nags at me day in and day out! It SCREAMS “If you wait for Doctors and Politicians to decide what is best for your child she may be dead, and then it will be too late”
My Daughter Cadence Hope is 8 years old. She has survived (how she is still with us is a miracle) with Intractable Epilepsy since infancy. I watched a video clip of a Father in the U.S.A. PLEA to his government and his president to approve CBD rich marijuana so his son could live and thrive. This boy, Jayden, suffered tremendously with seizures so much so that it brings a grown man to tears with fear that he may very well have to bury his son. What is the hold up? I understand why Marijuana is illegal because of the effect THC has on the body, however it has become apparent that Strains high in CBD and low in THC hold huge potential for a safe and effective therapy for Refractory or Intractable cases of epilepsy. At the very least the anecdotal evidence should be a strong catalyst for a nationwide trial. If CBD is as beneficial as I hope it is it is our governments responsibility to not only legalize it but allow caregivers and users to grow this particular strain, have it tested and then offer support to the grower to assist in preparation of and strength of dosages. I keenly remember not to long ago that some people, prescribed medication for seizures, were informed they could no longer get their medication. For a person with epilepsy, a lapse in availability could mean life or death. It is all the more important to think out of the box when dealing with Intractable Epilepsy because the go-to treatments available to most patients prove ineffective at best. My Husband and I took our Daughter to Mexico for an unproven, “experimental” Adult placental stem cell therapy. We witnessed a great deal of improvement in our Daughter’s health and seizure activity in the year that followed, alas, they effects lasted only a year, her aggressive seizure disorder took over, and we could not afford to return on an annual basis. Cadence’s Dad and I felt confident enough that the treatment had enough therapeutic value that we returned with her for a second round before funds ran out. OHIP does not cover “experimental” treatments so we are back to adjusting a not so perfect ketogenic diet and increasing on a new medication. P.S. Cadence was able to come off of three anticonvulsants and doing well post stem cell. I have seen the potential of Adult placental stem cell therapy first hand and I do believe it’s effects warrant further investigation as a one or twice annual therapy for Intractable forms of epilepsy. Keep in mind “Intractable” means that other attempts to control seizures have failed. A new strain of Medical Marijuana called Avidekel hails from Israel. It contains 15.8 percent CBD and less than 1 % THC. Of the brave parents who have fought tooth and fist to acquire high CBD Marijuana for their epileptic children all seem to have done so out of a desperation I understand well. If there is just one more option available to us, I will take it even if it is labeled “unproven” or “experimental”. That desperate voice in my head nags at me day in and day out! It SCREAMS “If you wait for Doctors and Politicians to decide what is best for your child she may be dead, and then it will be too late”
My Daughter Cadence Hope is 8 years old. She has survived (how she is still with us is a miracle) with Intractable Epilepsy since infancy. I watched a video clip of a Father in the U.S.A. PLEA to his government and his president to approve CBD rich marijuana so his son could live and thrive. This boy, Jayden, suffered tremendously with seizures so much so that it brings a grown man to tears with fear that he may very well have to bury his son. What is the hold up? I understand why Marijuana is illegal because of the effect THC has on the body, however it has become apparent that Strains high in CBD and low in THC hold huge potential for a safe and effective therapy for Refractory or Intractable cases of epilepsy. At the very least the anecdotal evidence should be a strong catalyst for a nationwide trial. If CBD is as beneficial as I hope it is it is our governments responsibility to not only legalize it but allow caregivers and users to grow this particular strain, have it tested and then offer support to the grower to assist in preparation of and strength of dosages. I keenly remember not to long ago that some people, prescribed medication for seizures, were informed they could no longer get their medication. For a person with epilepsy, a lapse in availability could mean life or death. It is all the more important to think out of the box when dealing with Intractable Epilepsy because the go-to treatments available to most patients prove ineffective at best. My Husband and I took our Daughter to Mexico for an unproven, “experimental” Adult placental stem cell therapy. We witnessed a great deal of improvement in our Daughter’s health and seizure activity in the year that followed, alas, they effects lasted only a year, her aggressive seizure disorder took over, and we could not afford to return on an annual basis. Cadence’s Dad and I felt confident enough that the treatment had enough therapeutic value that we returned with her for a second round before funds ran out. OHIP does not cover “experimental” treatments so we are back to adjusting a not so perfect ketogenic diet and increasing on a new medication. P.S. Cadence was able to come off of three anticonvulsants and doing well post stem cell. I have seen the potential of Adult placental stem cell therapy first hand and I do believe it’s effects warrant further investigation as a one or twice annual therapy for Intractable forms of epilepsy. Keep in mind “Intractable” means that other attempts to control seizures have failed. A new strain of Medical Marijuana called Avidekel hails from Israel. It contains 15.8 percent CBD and less than 1 % THC. Of the brave parents who have fought tooth and fist to acquire high CBD Marijuana for their epileptic children all seem to have done so out of a desperation I understand well. If there is just one more option available to us, I will take it even if it is labeled “unproven” or “experimental”. That desperate voice in my head nags at me day in and day out! It SCREAMS “If you wait for Doctors and Politicians to decide what is best for your child she may be dead, and then it will be too late”
my daughter is now 27 and i pray that soon she will be able to try cbd as well,she has suffered from seizures since a baby ,ans so far nothing has helped only injured her more as far as im concerned.
my daughter is now 27 and i pray that soon she will be able to try cbd as well,she has suffered from seizures since a baby ,ans so far nothing has helped only injured her more as far as im concerned.
my daughter is now 27 and i pray that soon she will be able to try cbd as well,she has suffered from seizures since a baby ,ans so far nothing has helped only injured her more as far as im concerned.
My 7 year old daughter Isabelle has been suffering from a severe seizure disorder since birth. She has been left with severe hearing loss, some vision loss, mental and physical delays. The treatments available so far in our experience have done more harm than good. If I could have been given a choice between a synthetic drug and a natural extract such as cbd, well it would be a no brainer. The moment I heard of Charlotte’s web, I knew with every fiber in my body that this was the answer to my prayers. If you could witness first hand what these children go through you would understand too. There should be no debate, these children don’t have time to wait. It is in my mind a crime against humanity to not take immediate action on this subject. If I could get my hands on cbd today I would give it to my daughter yesterday.
My 7 year old daughter Isabelle has been suffering from a severe seizure disorder since birth. She has been left with severe hearing loss, some vision loss, mental and physical delays. The treatments available so far in our experience have done more harm than good. If I could have been given a choice between a synthetic drug and a natural extract such as cbd, well it would be a no brainer. The moment I heard of Charlotte’s web, I knew with every fiber in my body that this was the answer to my prayers. If you could witness first hand what these children go through you would understand too. There should be no debate, these children don’t have time to wait. It is in my mind a crime against humanity to not take immediate action on this subject. If I could get my hands on cbd today I would give it to my daughter yesterday.
My 7 year old daughter Isabelle has been suffering from a severe seizure disorder since birth. She has been left with severe hearing loss, some vision loss, mental and physical delays. The treatments available so far in our experience have done more harm than good. If I could have been given a choice between a synthetic drug and a natural extract such as cbd, well it would be a no brainer. The moment I heard of Charlotte’s web, I knew with every fiber in my body that this was the answer to my prayers. If you could witness first hand what these children go through you would understand too. There should be no debate, these children don’t have time to wait. It is in my mind a crime against humanity to not take immediate action on this subject. If I could get my hands on cbd today I would give it to my daughter yesterday.
Please help this little one and all little ones like her!!
Please help this little one and all little ones like her!!
Please help this little one and all little ones like her!!
Please help this little girl and her family and all those who suffer from this rare disease.
Please help this little girl and her family and all those who suffer from this rare disease.
Please help this little girl and her family and all those who suffer from this rare disease.