Even when doctors are curious and generally “supportive” of treating your child with cannabis, we know them to be cautious and not that directive. This places a lot of extra responsibility on parents to learn how to treat their kids safely with cannabis. For general education, I can’t recommend enough Dr. Bonni Goldstein’s book, Cannabis Revealed. You can read extra tips for treating epilepsy from her here. ***Below is a list of suggestions parents in our community have found to be beneficial in consideration of safety:
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- Create a treatment plan and take good notes.
There is a comfort that comes with having a plan. Creating clear treatment goals and steps for how to get there are important because its very easy to get scared and go rogue. Especially parents weaning pharmaceutical medications and contending with withdrawal effects. Referring to a well-thought out dosing schedule and titration plan can slow you down and help keep you focused. The educational materials (found in the patient portal) at The Realm of Caring are wonderful tools for creating a treatment plan. You can find a commonly used dosing calculator there. One of our group members also created this CBD dosing app for your phone. Of course this plan needs to remain flexible, and taking good notes and having a plan is exactly what will inform you of when making a change does make sense. Some of us use Seizure Tracker and other apps on our phones. But I love this suggestion from a mom in our community - she writes notable events on an actual wall calendar so she has a visual of trends and patterns in her child’s responses.
- Educate yourself about the options.
Southern California is a great place to be a cannabis patient, in large part because we have access to whole plant medicine. This cannot be taken for granted. CBD is not THC minus the high. They have different therapeutic effects. Common “artisanal” options include oils made with extracted concentrates of THC, CBD and THCA. All three are good medicine and could make good sense for different reasons. Pay attention to strains, ratios of CBD:THC, concentrations, extraction methods and carrier oils when making comparisons between products and brands. And to compare prices, divide the price by total mg in the bottle (not ml). Parents have also started venturing into oils stronger in lesser known cannabidiols, like CBDA, CBG, CBGA, CBN, etc. Dr. Bonni Goldstein’s new book is a great resource for learning what all that means. You also may have heard of Epidiolex, the GW Pharmaceutical CBD product finally approved by the FDA. This isn’t really the same thing, as a CBD isolate it does not provide the often desired “entourage effect” found in a whole plant extraction. Know that if one doesn’t work, the other might. And that the artisanal model will always have more options. Science is slower than parent pioneers. ***It also feels very important to highlight that recreational products ARE NOT medicinal grade. DO NOT just use any product available in a dispensary. DO NOT take a “bud tenders” recommendations. Refer to our resource list here for tested, high quality products designed specifically for pediatric use.***
- Tell your doctor.
It really is better for everyone. If your doctor isn’t “supportive”, there is either a good reason to be considered, or you need to find a more progressive physician. In San Diego, this doesn’t have to be a problem and you can find a list of doctors we’ve used here.*** Regardless of where you live, connecting with other families is the best way to find other doctors who are generally open (Facebook remains the primary resource for networking all things pediatric cannabis). While most doctors typically don’t offer much guidance when it comes to how to treat with cannabis (and this isn’t the doc to provide a medical marijuana recommendation either), doctors are still key members of your child’s treatment team. They’ll order and interpret all your child’s diagnostic tests, blood work and help you manage potential drug interactions and weans.
- Test your kid.
Before and while treating with cannabis. Good baseline test results are key for measuring improvement over time, including blood work on pharmaceutical medications, EEGs, MRIs, bone density scans, etc. Rechecking periodically after starting also helps check for potentially dangerous drug interactions that can develop over time. My son had interactions and his daily seizure count doubled within 2 weeks of starting on a very small daily dose of high CBD. Interactions can happen with medications that, like cannabis, also use the p450 enzyme. There are reports of levels moving below and beyond a therapeutic range. Be sure to check with your child’s doctor to learn if their pharmaceutical uses this enzyme. You may need them to closely monitor this for you with frequent blood draws. If your child’s medications are not able to be screened, unusual behaviors and symptoms can also be indicative of an interaction and should be closely watched. You may want to review the potential side effects of the medications they are taking to compare with the symptoms you are seeing at home.
- Get both a medical marijuana recommendation and identification card.
Many of us started with a high CBD product that we ordered online and had delivered through the mail that didn’t require a recommendation for access. This is still true if your product is classified as hemp. However, the new laws in California require all cannabis purchases to be made at a dispensary. A state Medical Marijuana Identification Card will be required to purchase larger amounts and to get a discount on certain taxes. To learn more about how these changes could impact your family click here. In order to qualify for this card, you’ll first need to get a medical marijuana recommendation and an additional form filled out by the doctor. Most of these doctors sadly closed up shop once recreational use became legal, and not every medical marijuana doctor will write one for kids. You can find a short list here. (I’m sure there are more and if you send me your resources I’d happily share them.) Know that most of these doctors don’t provide medical advise. Don’t worry too much about that part though because you will get that information from other places - i.e. other parents, The Realm of Caring and other nonprofits. What you need is the ability to have access to as many options as possible and a recommendation provides access to those.
- Consult the few medical professionals who can actually help.
Most doctors don’t know anything about using cannabis medicinally, so if you’re looking for actual medical advise that can be hard to find. However, here in So Cal we are unbelievably lucky to have access to a handful of bold practitioners who are willing and able to support us. Dr. Bonni Goldstein at the Cannacenters of Lawndale is the most well known. She used to be known for her long waitlist, but I’ve been told she’s trained other doctors to help so the list is moving now. You can read her recently published book, Cannabis Revealed. I also always refer families to Dr. Michelle Sexton, a naturopathic doctor in San Diego and expert in all things cannabis. While she is unable to provide a recommendation, Dr. Sexton is another brain to pick when treatment planning and she has a wealth of information and experience in holistic healing in general. The nurses up at Radicle Health in Los Angeles can also provide guidance, but not a recommendation.
- Talk to other parents.
WE are the wisdom holders when it comes to treating children with cannabis. Not physicians. This is intimidating at first, but I can assure you, it becomes very empowering over time. Pediatric cannabis is a very personalized and collaborative form of treatment. I can’t think of a better resource than another family also treating their child with marijuana. Every single mom I talk to is doing something bold and creative and amazing that is working. You will learn so much from their story. Reach out! There are a large number of pediatric cannabis groups easily found on Facebook. (I recommend Facebook for networking and sharing resources only. Never for medical advise.) And of course if you are in Southern California or San Diego specifically please feel free to reach out to our group for support at [email protected]. We have incredibly wise veteran moms in our local community. Somebody is certain to know something helpful.
- Test your cannabis oil.
While cannabis itself appears to have an impressive safety profile, all of that can change while being grown and during production. Using a clean, tested oil is a critical must. You do not want pesticides and molds in your child’s medications. You can learn more about why medical marijuana testing is important here.
- Start low, go slow.*
Less is often more for a number of reasons. There are a few different dosing schedules floating around based on mgs per pound or kilogram of your child (and the educational center at The Realm of Caring is a great place to find one). Go with the most conservative that makes sense. Starting with high amounts and titrating up quickly hasn’t worked for any of us treating epilepsy. The addition of too much can be just as problematic as too little. Dosing in small amounts can give you more control in looking for that sweet spot. And it can be really expensive, so why pay for more than is necessary. Treating with cannabis needs to be sustainable all the way around. *However, autism families take note: low amounts of CBD can be agitating and some families find high CBD more effective when they start with a higher dose that can be more sedating.
- Other common dosing tips:
- Make only one change at a time when possible so you knowing what’s doing what, space cannabis 2 hours apart from pharmaceuticals to help prevent medication interactions and take with a high fat snack to aid absorption.
- Pick one brand and product and stick with it for a while. Frequently switching back and forth between strains/product lines in a short amount of time can be very problematic, especially in the beginning.
- Oils can be administered by syringe, in capsules and through G-Tubes. Rectal dosing has been found helpful when digestion is problematic or when using cannabis as an emergency medication.
- Use a clean syringe with each dose to avoid contaminating the entire bottle.
- It is not uncommon to see benefits from a specific product wane over time and to need to switch to a new product - many of our families have a few they rotate between. Some patients also benefit from “reseting”/”rebooting” their endocannabinoid system by taking a 1-3 days off and then restarting the same product.
- Have realistic expectations.
Some kids are lucky and stop seizing from the first dose. We have them in our group. But a lot of kids take longer. My child took 8 weeks, some take months (and sadly some won’t respond at all). Treating your child with cannabis can be a commitment, requiring patience and tinkering. Some kids are only taking cannabis, others are using it in combination with pharmaceuticals. It may increase quality of life more than decrease seizure count. Individual response cannot be predicted. Educate yourself, ask questions, observe, document and connect with others. This will give you the tools to identify what works and doesn’t work for your child.
*** We have shared our resources to prevent the scavenger hunt effect that can increase a caregiver’s anxiety. This is a firm reminder, however, that you are ultimately responsible for your own child and choices.
