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How Can Parents Balance the Risks With the Potential Benefits of Medical Marijuana for Very Sick Children?

Dr. Malik Burnett and Amanda Reiman, PhD, MSW

Dear Doctors,

“My next-door neighbor has the cutest child I’ve ever seen. Unfortunately, the child has been battling severe epilepsy from a young age. We have a very tight community here, and I want to help the best way I can. I read and hear a lot medical marijuana – particularly high CBD strains. The results seems so promising, but I am concerned about the stigma they might encounter from giving their child marijuana, especially from family members and the community. How do they balance these risks with the potential benefits?”

Concerned Neighbor

Dear Concerned,

Thanks for your question. We have received questions about medical marijuana for children from a number of readers who follow this column. First, it is important to know that as parents, your neighbors have the right to determine what is best for their child.  Managing all the issues which come with a child who has severe epilepsy is challenging in its own right, and they should not ever feel the additional burden of having others judge their decision making capacity as a parent.

When it comes to accessing medical marijuana, if you live in one of the 23 states which allow for the use of medical marijuana, you should help your neighbors take the time to become familiar with the steps required to obtain medical marijuana for their child. This usually begins with a conversation with the child’s doctor, and given the increased media coverage of the benefits children have been receiving, most doctors who deal with epilepsy should be familiar with the treatment option or at least open to the conversation.

It is important to note, that the science on cannabis therapy in treatment of epilepsy is still in its infancy; however, results have been promising. Historically, the English neurologists Drs. Russell Reynolds and William Gowers used cannabis indica in conjunction with bromide as a therapy for epilepsy in the late 19th century.

In more modern preclinical animal studies conducted in the 1970s, CBD was shown to have anticonvulsant effects when seizures were acutely induced in mice. Later studies revealed a potential mechanism for this effect, by showing that CBD raised the threshold requirement, after one action potential, making it more difficult for subsequent action potentials to fire and propagate seizure activity. In humans, CBD has passed through the required safety and pharmacology trials, with very few issues or concerns. The cannabinoid is well tolerated and has no significant side effects or adverse reactions, which certainly cannot be said of anti-epileptic drugs.

Given these results, GW Pharmaceuticals, was the given the go ahead to conduct a preliminary phase 3 clinical trials with their drug, Epidiolex, in select hospitals in the US under the FDA’s expanded access Investigational New Drugs program. Initial results have proved promising with an overall 44 percent seizure reduction seen in the 27 Dravet syndrome patients tested. Epidiolex is an investigational drug which comes in liquid form and contains 98 percent CBD, trace quantities of some other cannabinoids and very little THC. In spite of the promise of this drug, it will be years before, the drug is available to the approximately 466,000 patients who need it. 

Once the parents and the doctor have discussed all of the treatment options for the child’s epilepsy, and they all have come to the conclusion that the benefits outweigh the risks, the doctor should feel comfortable writing a recommendation for medical marijuana, if it is allowed under the state’s medical marijuana law. Some states require the approval of two physicians in order for children to gain access; however, this should not be too burdensome once the child’s epilepsy doctor has given their approval.

After securing all of the paperwork required by your state, they should next have a conversation with the individuals at one of your state’s registered dispensary. The dispensary should be able to inform them all the strains which are reported to be helpful for children with epilepsy. Additionally, it is best to work with a dispensary that is  able to provide patients  with all of the information related to purity, potency, cleanliness, and cannabinoid profile of the cannabis which they will be selling. Finally, the dispensary should give them tips on how best to administer the medicine.

When your neighbors begin to administer the medicine to their child, it is most important that they go slowly, start with a small dose and titrate up over time, and communicate with their physician. Much like many of the anti-epileptic medicines on the market, each dose works differently for each person. Let them know that it is important that they keep good records of both the amount of medicine and the number of times they are administering the medicine per day. Keeping good records will allow them to get a better gauge of how their child is responding.

Ultimately open and honest communication works towards dispelling the stigma associated with medical marijuana and ensures everyone is up to speed on the latest developments and their concerns are focused on the well-being of the child, where they belong.

The Doctors

Dr. Malik Burnett is a former surgeon and physician advocate. He also served as executive director of a medical marijuana nonprofit organization. Amanda Reiman, PhD, holds a doctorate in Social Welfare and teaches classes on drug policy at the University of California-Berkeley.

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