Overview of Medical Marijuana/Cannabis for Kids with Seizures

My daughter tends to be the outlier, the exception, the unexplained result on everything so I did a lot of research before trying cannabis on her. I spent a great deal of time asking questions on Facebook groups, reading research papers, visiting dispensaries, talking to growers, talking to frequent cannabis users and neurologists about using cannabis for seizures. It turns out everyone has their own opinion and no one really knows anything for certain except that sometimes it works, sometimes it kind-of does and sometimes it doesn’t at all. I’ve summarized some of my findings below, although keep in mind that this is a frontier in medicine and findings are changing all the time. Hopefully someday we will have a better understanding of cannabis so that we can more effectively use it to help our kids, especially the tough cases like my daughter.

Good Practices

  1. Understand the Goals & Risks – Have a clear idea of why you are administering cannabis (such as seizure reduction, pain, appetite), because it is not necessarily harmless and long-term use may cause permanent changes in the brain. Don’t treat it like a multi-vitamin. We just don’t know for sure until there are better studies available.
  2. Collect Data – Record dates, strain names, where it’s from, dosing amounts, frequency of administration, other medications taken concurrently, child’s weight and observed effects. This will help you figure out what works best for your child’s specific biochemistry.
  3. Go slow – Start with a very low dose and titrate up slowly. Don’t change other medications while you are changing the cannabis dose. The effect of cannabis changes over time even if everything else stays the same, so go slowly, carefully, and observantly. Keep meticulous records of strain, dose amount, amount per day, and effect on medical condition, as well as any other unusual traits you might observe (both positive and negative).
  4. Be prepared for setbacks – For some kids cannabis is their wonder drug, they see immediate results and it just works for them. Others have temporary success but then have a bigger seizure than ever and end up back on all the medications they just weaned. Some see an increase in seizures at first but then have lasting success after sticking with it for a few weeks. For some one strain works but not another so it may be a lot of trial and error.
  5. Be a smart consumer – heavy metal contaminates have been found in some online products. Do your research and ask questions.

Three Approaches

(Note that I’ve focused on oils since they are the most common method of administration for children, but a topical lotion, rectal administration, vapors or edible product might work just as well for some. Oils are typically coconut or glycerin/MCT, olive oil is less common because it can turn rancid over time).

  1. CBD oil – CBD is a non-psychoactive chemical in marijuana and is thought to give medical benefits without causing a high. Made famous by Charlotte’s Web, CBD oil is typically made from strains of marijuana that are also very low in THC. Note that in dispensaries ‘high CBD oils’ also tend to have a high amount of THC and are NOT what you want. You want .5% or less of THC.

You can legally order CBD oil online and have it mailed to your home. Some will even help with dosing and support. Here is a list from parent and marijuana advocate Janel Ralph:

There is also Charlotte’s Web from Realm of Caring: https://www.theroc.us/. Keep in mind that they are controversial among some parents because of their refusal to disclose test results and the thought that they’ve replaced their original Charlotte’s Web strain without alerting their customers. But it certainly works for some kids and is the biggest CBD supplier.

Another option is to find a local grower to help you out or to grow the plants yourself (in Oregon). The Oregon Microgrowers Guild in Eugene will supply a free CBD clone http://www.oregonmicrogrowersguild.com/.

  1. THCa oil – Some believe in using a whole plant approach, rather than focusing on CBD only. There are over 400 different chemicals in cannabis but we can only test for about 15 of them at this time. It is thought that these chemicals work best synergistically and that it is good to have a broad-spectrum available to heal the body. THCa oil is unheated (I think of cold-pressed olive oil) meant to preserve some of the chemicals lost in decarboxylation (heating). Until it gets old (which causes THCa to break down into THC), it also has the advantage of not getting the user high, just like CBD oil. THCa oil is not available for sale in the dispensaries. You have to make it yourself as an oil or juice.
  • Step-by-step guide to make your own cannabis oil: Epsilon Guide by David Mapes http://www.epsilonresearch.org/
  • Juicing raw cannabis is becoming popular but I don’t have a good source for information on this yet. Just have to Google it yourself if you are interested.
  1. Cannabis/Marijuana oil – Even if THCa and/or CBD oil are the primary medicines, many believe there still needs to be some element of regular old active THC marijuana oil to maximize efficiency. And some patients find that marijuana oil is the only thing that works. Marijuana, and sometimes the oils, are readily available in dispensaries but there are many, many strains and it is hard to know where to start. When CBD oil and THCa oil did not work for my daughter’s seizures and we were feeling very overwhelmed by what to do next, we stumbled into a local start-up company that offered to help. At the time we paid $1500 but I hear they are strictly charging more now. The summary of our experience was that they did indeed help us find something that stopped my daughter’s seizures, but for unknown reasons it only worked for two weeks. We will continue to work with them to see if we can find another strain/combo of strains that might work. I’m happy to tell you more if you are interested.

http://www.thatisremarkable.com/blog/2014/2/22/big-data-meets-marijuana-how-a-bio-tech-startup-in-eugene-or.html

For Inspiration

Susan Meehan is quite possibly the most determined mother I know of when it comes to saving her daughter with cannabis. She fights so hard for her daughter and been open about it at a time when no one else was. Her story can be found here: https://www.facebook.com/groups/Cyndimae/

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