The running joke in our house has become that our baby girl has used cannabis before the age of 1, whereas my husband and I never have lol. CBD Oil. What is it? How does it work? Is it legal? Being that I am not well versed, like by any means, in the cannabis industry, I had never even heard of CBD. But, when Madison was diagnosed with Infantile Spasms, and nothing was working, I started doing my research on what other forms of treatment were available. CBD came highly recommended by many mama’s of epileptic children who were lucky enough to watch their babies become seizure FREE (yep, not one seizure), by using CBD oil. Next thing I knew I was ordering weed for my baby. Okay, not really weed, and perhaps this is why CBD is so controversial; it comes from the cannabis plant, but is nothing like the stuff people smoke or use recreationally. While marijuana contains both THC & CBD, the two compounds are entirely different and likewise have entirely different effects on the human body.
THC creates a “high” or mind-altering effect. CBD on the other hand is not psychoactive and doesn’t change a person’s state of mind while using it. For this reason, CBD has become appealing for those looking for relief from pain without the mind-altering effects of marijuana, and even many pharmaceutical drugs for that matter. It comes from hemp which is the least processed form of the cannabis plant. Marijuana has higher levels of THC and hemp has higher levels of CBD. In order to be considered hemp, a cannabis plant must contain less than .3 percent THC. The oil is made by extracting CBD from the cannabis plant and diluting it with a carrier oil. CBD may also come in capsules, a cream, or a spray.
How does it work? Well, inside the human body is the endocannabinoid systems with receptors that spread throughout the brain & body. The body produces its own cannabinoids and has two receptors for these called the CB1 and CB2 receptors. CB1 are mostly present in the central nervous system and CB2 are more common in the immune system. While THC activates these receptors, it is believed that CBD directs the body to use more of its own cannabinoids, affecting coordination, movement, pain, mood, appetite, inflammation, etc..and in turn has been used for the following conditions:
- Pain Relief
- Anxiety & Depression
- Neurological Disorders
We have only tried CBD in the oil form, and only in regards to Madison’s epilepsy, so I cannot comment on using it outside of that, although many people claim that it has helped them tremendously without the many side effects of pharmaceuticals.
There are various companies selling CBD out there, but the three mainstream brands talked about in the Epilepsy world are Charlotte’s Web, Haleigh’s Hope, and Palmetto Harmony. When purchasing CBD you want to make sure you purchase from a reliable brand that can or does provide lab results so you know what you’re getting, and that each bottle is the same. So far, we’ve tried both Haleigh’s Hope and Palmetto Harmony. Unfortunately for us, the CBD did not stop Madison’s seizures, although we did see an increase in clarity in her. The trick with CBD is the dosing. You have to be super patient and willing to try a variety of different doses until you find the right one that works for your child. The process can take months. I’m actually still hopeful that CBD could still work for Madison, but that perhaps we just haven’t found the right dose for her yet.
In general, it is recommended to dose 3x a day, although some people find more success dosing more heavily 2x or by micro-dosing 4x a day. Dosages are based on the child’s weight and concern, in our case seizures. It is given sublingual, or under the tongue. Each brand provides their own calculation and instructions on how to come up with a starting dose. They say it takes 2-3 weeks for the CBD to fully reach the body’s receptors and start doing their thing, so here’s where your patience has to kick in- once you start, it is recommended to wait 2-3 weeks before adjusting the dose. That’s a long time when your child is having seizures and you so desperately want to see change! Each brand also provides guidelines on how to increase over time.
Unfortunately, in many cases people have found that CBD worked the best for them, when not taking any other pharmaceuticals. Of course, this would be ideal. I’d love my daughter to be on something natural with no real side effects, as opposed to the list of drugs she is currently taking, but in most cases it’s far too dangerous to stop taking anti-epileptic drugs (AEDs), all together to give CBD a fair shot. CBD is safe in combination with most medications, but there are a few that it is known to have interactions with. In our case, Onfi is one of the AEDs that CBD can often interact with. CBD can increase or decrease the levels of Onfi in a person, and it is recommended that if on both you get bloodwork taken to check Onfi levels prior to starting CBD, as well as during, to ensure there are no issues. The last thing you want is toxic levels of an AED in your system. That being said, when we started Onfi with Madison, she was also on CBD, and we saw things get worse. Another unfortunate caveat to both CBD and AEDs is that things often get worse before they get better. Most people claim that if you stick it out with CBD, things calm down, and many have found seizure freedom.
We gave Madison a few weeks to adjust, even taking her Onfi back down to see if the CBD worked more efficiently. When that didn’t work, we stopped the CBD, and let the Onfi have a shot. We then saw the biggest decrease in her seizures, so unfortunately and fortunately, we saw the Onfi without CBD work the best. We were so extremely hopeful CBD would work for our girl and were excited about the chance of something more natural doing the trick, but it hasn’t worked out for us just yet. That’s not to say we wouldn’t give it another chance, or try adding it back to see if we do see an increase in her clarity and motor skills. But since we are finally seeing some, maybe seizure free days, we’re not willing to rock the boat right now.
I have personally seen SO many children throughout support groups be healed of seizures with CBD. I have seen children begin to develop, be weaned off strong AED’s, and literally not have one seizure ever again, after starting CBD. To me, that’s nothing short of a miracle, and it’s kinda crazy to think so many people aren’t willing to try it, simply because of where it stems from. We are lucky to have an extremely supportive neuro and care team for Madison who were all on board with us trying CBD, but many families are not as blessed. Many families have to seek second, third, and fourth opinions, perhaps even uproot their entire family to another state, to get the support and guidance they need in trying to help their child.
One of Madison’s neurologists is actually one of the only doctors in the state of NJ who is legally allowed to prescribe medical marijuana in fact. Before starting CBD we talked to him about it, and he actually shared that from his experience he saw more patients have success in treating seizures when adding more THC. While many doctors judge families for wanting to use CBD even though it is not psychoactive, here one of Maddie’s doctors is actually recommending giving additional THC. I should mention that many people in the epilepsy and CBD support groups I am a part of agree with his statement. Because many states have not legalized marijuana at this time, including NJ, adding THC is extremely hard to do. Currently in NJ we would need to register Madison as a part of the medical marijuana program, and have her doctor prescribe THC. The laws when it comes to CBD on the other hand are a bit murky, but because it is considered a hemp with less than .3% of THC, it is found legal to possess and distribute. I’ve purchased both CBD brands online. The plan for us was to try the Ketogenic Diet and then Medical Marijuana, if Onfi didn’t work. Since Onfi seems to have suddenly greatly helped, I’m not sure if we will continue down either of those paths, but we’ll see in the next few months where Madison’s journey takes us!
While there isn’t a ton of research on the long-term effects of CBD yet, there are minimal to no side effects noted with taking it at this point in time. And if you ask me, at one point there wasn’t research on the long-term effects of any of these extremely strong and addictive medications that are prescribed to children, yet that didn’t stop people from trying them. We need to be willing to research our options and try new things, or there will never be studies on anything. There can’t be research on the long-term effects of CBD, if no one is willing to use it. And where there is data supporting the fact that it has helped a tremendous amount of people, why not try it for yourself if it’s something you feel is a good fit?
Recently the FDA approved the first prescription grade CBD called Epidolex. Most people in the Epilepsy world are against this product in comparison to non-prescription CBD oils. This is because Epidolex is a single molecule isolated pharmaceutical, whereas CBD from Haleigh’s Hope or Palmetto Harmony are full plant extracts. Epidolex contains artificial ingredients, and CBD oil is natural. There have been children in the Epidolex case studies who have benefitted, so I can’t say that it’s not worth a shot either. Again, every child is different, and what works for one, may not work for another. As much as I’d had loved for Madison to take her first dose of CBD and be cured like so many children have experienced, that didn’t happen for us. As much as I’d had loved it if her neurologist recommended the natural routes first: CBD & the Ketogenic diet, instead of pushing medications, we’re not really there as a society yet. For now, it is up to John and I as Madison’s advocates to research what we can and make the best choices for our little miracle.
Why someone would judge someone else on trying something proven to stop seizures in children, just because it’s something the medical field doesn’t necessarily promote, is beyond me. All parents want to help their children. All parents want to take any pain and illness away from them. If a cannabis based natural oil can do that, why not try it. I am 30 years old and have never tried marijuana, and I didn’t think twice about trying CBD with my baby. They are two entirely different things. Hell, if nothing else worked and we felt THC would benefit her, I wouldn’t think twice about trying that either. I would try anything to get my baby seizure free and to give her a fighting chance at developing, learning, and growing in this world. All kids deserve that shot and whatever path safely and effectively gets them there, should be taken and supported. Is CBD right for you? I urge you to do your own research and ask questions. This post is based on my research, discussions with others, and personal experience with CBD oil. I wish anyone on this journey the best of luck and I sincerely hope that something natural like CBD does work for you, even if it hasn’t worked for us just yet. Have a great weekend everyone!
September 14, 2018
Kelly, you are amazing. Thank you for sharing Madison’s journey♡. You probably don’t fully realize just how much you are helping and touching other peoples lives. I learn so much from your blog. I love the information you share. You are an excellent writer to boot!
Madison is just one month younger than our Olivia (I am Grandma). So much of Madison’s experiences and diagnosis are the same as Olivia’s.
Thank you and keep on keeping on.
September 14, 2018
Thank you so much Lisa! Your kind words are exactly why I started this blog. It’s a shame so many beautiful babies go through these hardships, but sticking together in this community of special needs has helped me tremendously. I hope Olivia and Madison defy all the odds! They are true miracles.