My understanding is that the main reason marijuana is not being prescribed is that there have not been enough studies to prove the safety and efficacy of marijuana in epilepsy. I would counter that Braxton has now tried ten seizure medications (keppra, clobazam, trileptal, sabril, nitrazepam, topiramate, ativan, phenobarbital, clonazepam, and midazolam) of which many lack long term studies for their safety in children under one, and we have witnessed all ten fail at stopping his seizures. In fact, instead of helping Braxton, we have seen that many of these medications further complicated his condition, making him excessively drowsy causing feeding and breathing problems, and increasing secretions which he aspirated. These drugs had side effects such as vision loss, kidney stones, and impaired coordination. Therefore, every medication prescribed by doctors since my baby started having seizures at three months of age has failed in safety and efficacy.
Our current treatment path is a ketogenic diet. Although we have seen improvements in Braxton’s development being off benzodiazepines and on a high fat diet ratio, he is still having 20-50 visible seizures (infantile spasms) a day, as well at least one generalized seizure a week. Braxton’s EEG shows he has hypsarrhythmia which has a strong correlation with cognitive impairment and developmental delays. The ketogenic diet is a treatment that, although is still not fully understood why it works to treat epilepsy, is prescribed and endorsed by the Alberta Children’s Hospital. Here is the Charlie Foundation's (a leading foundation on the ketogentic diet) position on marijuana derivatives for epilepsy treatment:
The Charlie Foundation was founded on the principle that the medical standard of care needs to be a process of informed, joint decision making between a patient or caregiver, and his/her health care provider. We have the highest regard for the value and necessity of science. We have much less sympathy for the intervention of government in this process.
What's more, science doesn't always lead the way. Frequently there is a painstaking period while science takes a great deal of time to substantiate or rule out what may be fact. Many don't have the luxury of that time. That's when factors such as anecdotal evidence and risk/benefit ratio need to be considered without government interference. That's where it appears we are with CBD today.
If we had waited for a randomized controlled study to be published on the efficacy the ketogenic diet, Charlie would have been seventeen years, rather than 20 months old before he started the diet, and I don't know that we would still have him today.
What's more, to paraphrase "first do no harm": "To pretend that multiple drug treatments for children with difficult to control epilepsy are science and then argue against CBD is the cruelest of double standards."
(Jim Abrahams, The Charlie Foundation, April 3, 2014)
“The Epilepsy Foundation supports the rights of patients and families living with seizures and epilepsy to access physician directed care, including medical marijuana. Nothing should stand in the way of patients gaining access to potentially life-saving treatment. If a patient and their healthcare professionals feel that the potential benefits of medical marijuana for uncontrolled epilepsy outweigh the risks, then families need to have that legal option now -- not in five years or ten years. For people living with severe uncontrolled epilepsy, time is not on their side. This is a very important, difficult, and personal decision that should be made by a patient and family working with their healthcare team.
Treatments for epilepsy with any form of marijuana come with risks, as there is much that is not known about its effects. The consistency of available formulations also needs to be addressed. Caution is appropriate, and we strongly recommend that patients with uncontrolled seizures seek out an epilepsy specialist. However, existing therapies have real side-effects both known and unknown, and, just as there are risks with any treatment, every day without seizure control is a risk to life. Every seizure is a possible opportunity lost to live, learn, and grow.
The Epilepsy Foundation calls for an end to Drug Enforcement Administration (DEA) restrictions that limit clinical trials and research into medical marijuana for epilepsy. We applaud recent decisions that have allowed clinical trials of Cannabidiol (CBD) oil, to begin in several states. Certain components of medical marijuana, including CBD, have shown effectiveness in animal studies, and there have been encouraging anecdotal reports from patients.”
(February 20, 2014, Philip M. Gattone, President & CEO, Epilepsy Foundation, and Warren LammertChair, Epilepsy Foundation Board of Directors, http://epilepsy.com/article/2014/2/epilepsy-foundation-calls-increased-medical-marijuana-access-and-research)
Furthermore, Braxton qualifies for the use of medical marijuana under the current laws of Canada. “The current Marihuana Medical Access Regulations (MMAR) allow the use of dried marihuana in the context of epilepsy in patients who experience seizures and who have either not benefited from, or would not be considered to benefit from, conventional treatments” (Minister of Justice, Government of Canada. Marihuana Medical Access Regulations. 2011.) Further the government of Canada does not restrict the age of which someone can use medical marijuana, and so his age does not stop him from accessing this treatment.
Given the above, I do not see why Braxton cannot try medical marijuana. We seem to have exhausted all other possibilities for ending his seizures. Although we are currently tweaking his current medications and diet, I know that time is the enemy, and we cannot wait years for the government and research to explicitly state this is the right option for Braxton. The current process is relatively simple to get access, all you will need to complete is a doctor to complete a medical document with specific information that is similar to a prescription. But that is the hardest part for most families. Once complete, families send the document to a licensed producer with the registration form provided by the licensed producer. The licensed producer will fill and ship the order, based on the daily amount of dried marijuana indicated on the medical document. That’s it.
We hope to try this treatment and perhaps it will be the answer we have been searching for. Even if it’s not a magical cure, it certainly cannot do more harm than the cocktail of medications which left Braxton in the hospital for six weeks, unable to eat on his own and struggling to breath. So wish us luck as we go down this new, unknown path, pioneering new ideas in the treatment of epilepsy.