I think that people are sick of hearing statistics about the dangers of pharmaceutical drugs. We all know the risks in them and are desperately seeking something safer and less harmful while still treating the issues. It’s an epidemic.
Just wanted to say right off, I’m not going to provide instructions on how to get cannabis, what kind to get, instructions on use, and I don’t have any information about the laws or rules on it. (I’m sorry, I really am)
If you have any questions on the topic, ask your doctor. There are also plenty of Facebook groups where if you dug around, you could get some information. I do warn you though, the opinions and advice in those groups are very scattered, and I wouldn’t trust just anyone.
Why talk about it
I want to talk about this because as parents of children with neurological disorders, we need drugs that are effective for our kiddos but we don’t want the things that have harmful side effects. For me, my daughter Remy has autism and a rare genetic disorder called PCDH19 which causes her to have epilepsy.
Cannabis has been a hot topic for people with epilepsy because many people have found success in lowering their seizures using THC and CBD, which are both cannabinoids (or chemicals) found in the marijuana plant.
What are Cannabis and Cannabinoids
Cannabinoids are chemicals related to delta-9-tetrahydrocannabinol (THC), marijuana’s main mind-altering ingredient that makes people “high.” The marijuana plant contains more than 100 cannabinoids. Scientists as well as illegal manufacturers have produced many cannabinoids in the lab. Some of these cannabinoids are extremely powerful and have led to serious health effects when misused.
The body also produces its own cannabinoid chemicals. They play a role in regulating pleasure, memory, thinking, concentration, body movement, awareness of time, appetite, pain, and the senses (taste, touch, smell, hearing, and sight).
How might cannabinoids be useful as medicine?
Currently, the two main cannabinoids from the marijuana plant that is of medical interest are THC and CBD.
THC can increase appetite and reduce nausea. THC may also decrease pain, inflammation (swelling and redness), and muscle control problems. Unlike THC, CBD is a cannabinoid that doesn’t make people “high.” These drugs aren’t popular for recreational use because they aren’t intoxicating. It may be useful in reducing pain and inflammation, controlling epileptic seizures, and possibly even treating mental illness and addictions. Many researchers, including those funded by the National Institutes of Health (NIH), are continuing to explore the possible uses of THC, CBD, and other cannabinoids for medical treatment.
For instance, recent animal studies have shown that marijuana extracts may help kill certain cancer cells and reduce the size of others. Evidence from one cell culture study with rodents suggests that purified extracts from whole-plant marijuana can slow the growth of cancer cells from one of the most severe types of brain tumors. Research in mice showed that treatment with purified extracts of THC and CBD, when used with radiation, increased the cancer-killing effects of the radiation.
Scientists are also conducting preclinical and clinical trials with marijuana and its extracts to treat symptoms of illness and other conditions, such as:
diseases that affect the immune system, including:
- multiple sclerosis (MS), which causes a gradual loss of muscle control
- substance use disorders
- mental disorders
I want to mention that one of the ways that cannabis became such a hot topic amongst epilepsy is because of a girl named Charlotte. She has Dravet syndrome which is a severe and rare form of epilepsy. She just like so many others, was suffering from seizures so often, that her quality of life was going downhill very fast.
The Stanley brothers from Colorado were just starting to study the use of CBD for such causes. Charlotte’s parents sought them out and tried it on Charlotte. She went from hundreds of seizures a day to only 1 a week.
Since she started using CBD, she has gained a quality of life back and have been able to get off all other medications. Thats amazing
I wanted to mention that because stories like this are so promising. If a natural drug like cannabis can have such a positive affect on girls like Charlotte, It for sure will work on a girl like Remy.
Or will it?
Check out this youtube video of Josh Stanley who goes into the whole story. Quite amazing.
Our Story with Cannabis
When Remy first started having seizures, trying to figure out what was causing it, why it was happening, and what to do to stop the seizures was all consuming. I read and talked to experts and others who were dealing with similar issues.
I got advice from doctors, friends, other parents, neurologists, nurses, etc. The amount of information coming at me was a lot.
Then there were the people from the outside giving me advice too. Friends, friends of friends, strangers at the store or restaurant, everyone tried to offer up whatever they could to help our little Remy.
No one wants to see a baby suffer so much.
A topic that came out of just about everyone’s mouth was using cannabis to treat seizures.
So I asked everyone I could for information. No one really had any reliable information. Just saw a documentary or knew a guy who knew a guy.
We asked the doctors, and this is what we heard.
Our doctors told us that cannabis could be beneficial. But there aren’t any studies on the long term use of them. There isn’t a guide on what kind to get, what dose to give, how it mixes with other drugs, where it comes from and if the source is trustworthy and consistent.
They told us that we can try to use it on Remy, but they couldn’t give us any opinion or advice on where to get it, or anything like that.
We knew the other drugs had known long term effects. Most of them weren’t good, but at least we knew.
So we held off on that topic. Not enough useful information out there. And we didn’t know the first place to look. We knew that these medical marijuana stores wouldn’t know anything about neurological disorders so how could they possibly know anything.
Let’s Give It A Shot
A couple of years ago. We took a family trip. We visited with another family who has the same genetic mutation called PCDH19 just like Remy.
When we went to visit them at their house, Remy started a cluster. The seizures weren’t so bad. Meaning she didn’t totally need oxygen for these ones, but they were making Remy miserable. Which they often do. She gets these migraines from seizures and covers her eyes and cries.
My friend, the mom of this girl, recognized the pain that Remy looked like she was having. She said, do you want to try cannabis oil for Remy. It will help with her painful migraine and might help the seizures.
At this point, we never tried it because she was already on other drugs and we just didn’t want to do anything harmful by mixing drugs. But at this moment, we thought “what the heck, she’s suffering, we trust these people because they use the stuff on their daughter, why not.”
So we gave Remy some oil by mixing it with honey that she swallowed.
My friend said that if you ingest it, it might take an hour or two to kick in. As opposed to putting the oil in your cheek or under your gum or something which makes it work faster.
So we scooped up Remy, took her back to the Airbnb where we were staying and just waited it out.
Remy was crying and seizing all the way back to the house. We thought we could just put her on the couch and take care of her with the oxygen tank next to us.
When we got back, Remy started smiling. She was high. Then I read her a book, and she started laughing. Like hysterically laughing. I was amazed. She was NEVER like this during seizure clusters.
I knew it was the cannabis oil that was doing it, but I couldn’t believe how effective it was at making her go from total misery and migraine and crying and screaming, to laughing and playing.
We offered her some soup, and she was all over it. When she is in a seizure cluster, she doesn’t want anything to do with food or drinks.
Well, she had an appetite.
Then was the real test. Put her to bed and see what happens.
Now here is the pattern for Remy. If she is in a seizure cluster, she falls asleep usually having about 5 – 7 seizures before shes knocked out. EVERY time she falls asleep, she will have seizures. It’s inevitable.
Then she might sleep for 30 – 60 minutes and have another seizure and continue until she wakes up the next day.
We always know a cluster has ended because when she falls asleep and doesn’t have any seizures in the first 20 minutes, she’s good to go.
Well on this day, we put her to sleep, and she slept solidly with no seizures for 6 hours. Now during a cluster, at night, this has never happened before. Ever.
So that’s where it began.
We Became Fans
From then on, we have kept cannabis in her medicine regimen for those times that she is miserable in a cluster.
Now, I wish I could say that it was the magic thing that got us off of every other pharmaceutical. It hasn’t been.
I think that if you are interested in trying cannabis for your child. Its worth it. Not as scary as you might think. But what I don’t like, is that all the media around cannabis for treating seizures have been so good, that everyone naturally considers its the miracle drug.
One reason I believe is that we need those stories to move forward in getting laws in place and broadening the horizons of the medical field. All really important. But what I will say is that what it also does, it makes us feel like we HAVE to get our hands on some so eliminate the problem.
It must be tough and frustrating to be in a place where the laws don’t allow it. I hope this changes everywhere.
So let me tell you what happened when we experimented
So I talked about how the cannabis oil helped. So first, I believe the oil we used was high THC and low CBD. But we also got high CBD and low THC
Let me tell you how we treat Remy’s seizures when she has a seizure cluster.
By seizure cluster, I just mean that when Remy has one seizure, it becomes a chain reaction and she has many in a few days. Then she stops having them and goes back to baseline.
So we usually give her a very high dose of a benzodiazepine when she has her first seizure. The reason is that we know she will have more, so if we protect her with a high dose right away, she will be more protected from prolonged seizures, and it reduces the amount.
Without anything, she would go into status epilepticus, and it would be impossible to stop her seizures.
So what I wanted to try, was to see if we could ONLY give Remy cannabis oil during a cluster.
We had a bottle with a good amount of oil in it, but we were still playing around with the dosing. You have to basically guess what you’re doing.
The oil is so thick, it looks like tar. And sometimes its as thick as rubber. You have to heat it up a little just to get a drop.
So we found that 1 drop, about the size of a half a grain of rice, was enough to get Remy to feel better. If we gave her a grain of rice size or more, she would get too high and not be able to move off the couch or open her eyes very much. But she is always super happy regardless.
So we started her on this about every 6-8 hours. It seems to last about that amount of time.
What we found is that we had to keep increasing the amount and her seizures would progressively get worse. So we had to add a little benzodiazepine to get her out of the danger zone.
We tried that for 3 or 4 clusters.
But we never could do it for a long time before we had to introduce the benzo back in the mix.
Our conclusion for Remy is that cannabis while is beneficial in many ways for Remy, isn’t strong enough to be able to ditch the pharmaceuticals.
But I do have to say that the type of seizures that Remy has, are nasty.
It takes a LOT of any kind of drug to control them at all.
So now we just use it on those hard days along with the other benzo.
Why Not Make It A Daily Med?
People have asked about using every day. I am not convinced its good enough to add every day. I hear you have to give it about 3 or 4 times a day and increase the dose every so often because your tolerance gets up there.
There is all the talk about CBD. We have used CBD too, and that doesn’t work much on her migraines or seizures.
I know it all depends on the strain and source and dosage, and I am looking forward to better studies on it.
So that’s our story about Cannabis. Stay tuned for another convo in the future. Maybe by then we will have had more success.
If I were to give any advice on the subject, it would be this.
Educate yourself on the topic. Good ol Google can help a lot.
Talk to your doctor. You may be scared to tell your doctor you want to try it, but I suggest you do so that they can give you advice. There are some drugs that mixing cannabis into will raise the blood level of the other drug in the liver. If you give Sally a drug for years and then add CBD or THC oil, you could be giving them a toxic level of the other drug.
You might want to get levels drawn up to monitor.
Cannabis can be a huge benefit, and it’s worth looking into.
I can’t wait until it is available to everyone with epilepsy. Especially using it as a first line of defense before the other pharmaceuticals.
Next time I bring up this topic, I will interview an expert who can answer all of these questions we all have.
But until then, go check out that YouTube video about Charlotte. It will inspire you and touch your heart. A cute little girl who changed the world.
Let me know your experience using Cannabis for your child’s seizures. Also, let me know how you use it for other neurological disorders.
You can email me at [email protected]
Or find me on social and DM me.
Next week we are diving into a VERY big topic. Autism.
I haven’t talked much about our story of autism yet but next time I will.
I am excited about it because for the next, I don’t know 8 or so episodes, I am going to talk about how to implement strategies to connect with your child with autism. I am sharing a book that changed the trajectory of our path with Remy, and I believe EVERY parent of a young child with autism needs to read the book.
You know how they say that kids don’t come with a manual? Well, autistic kids REALLY don’t come with a manual. With autism, you can’t rely on parenting them using the same strategies you use with your neurotypical kids. So how do you know what to do? There’s a book that spells it all out. It changed our lives, and I can’t wait to share it.
I am talking about our autism journey on next weeks podcast and the week after that, we dive into the book. Stay tuned because there will be some prizes coming up that I can’t wait to get into.
Have a good week, let me know if you have any questions or comments, I would love to hear them.
Have a good day and see you soon.