Medical cannabis, epilepsy, nationality, and more

Hi everyone. I’m sure you’ve never heard me mention here that although I am American, I live in Indonesia. Did I mention that I live in Indonesia? :slight_smile:

Okay, that’s out of the way. Now let’s talk about a serious, heart-rending situation I’ve been asked to help with. Someone I know here (I’ll call her Lena), a Spaniard married to an Indonesian, has a child with severe epilepsy. As you can imagine, treatment options and medication in Indonesia are out-of-date to somewhat below average-ish at best.

Lena has recently heard about the promise of cannabis to treat epilepsy, through articles like this one.

In desperation she has turned to me wondering if I know anything about ways to help her access legal medical marijuana in Colorado. The shortest answer is no, I don’t know anything at all, and I am not optimistic about her chances of helping her child by accessing medical marijuana in America, especially given that neither she nor her husband are American, they are located in Bali, and I don’t think they have anywhere near the money that the author of the above-cited article describes spending in order to get help for his son.

Anyway, the best I can do is to offer to follow up with some dispensaries in Colorado, since by utter chance I’ll be there in April for a very short period of time. Lena has asked me to look into whether, if she and her family went to Colorado, they would be allowed to buy anything to administer to their son.

If anyone knows the answer to that question already, it would be great if you could let me know. Other questions:

  1. Can you think of anything I should discuss with a Colorado dispenser that would be of interest to Lena?

  2. Do you have any other suggestions or ideas for her?

Thanks in advance, everyone. There’s nothing worse than wanting to help your child and being powerless to do so. I honestly doubt I can give Lena much assistance, but I certainly will do everything I legally can to help.

(There are a few more details I could share - like how someone who is probably just impersonating a famous US physician is trying to scam her by telling her he can get her cannabis oil delivered to Indonesia from the US for $500 - but I’ll share as needed in light of any answers this post receives.)

Cite.

The article to which you linked is hardly even at the level of anecdote.

And the chemical being studied is one of the compounds in marijuana, and medical marijuana in Colorado is not going to be the same thing - it contains all the compounds found in the plant, not only an extract of the one that is supposed (without much evidence) to work.

Traveling all the way to Colorado to get a placebo does not strike me as cost-effective. Isn’t there something in Indonesia that is cheaper and harmless that she could use for placebo?

Regards,
Shodan

Gee Shodan, what a helpful post. You managed to answer all but two of my questions and your response was thoughtful in every way except for the lack of compassion shown for a desperate mother. It was lovely waking up to that! Thank you.

If you define “compassion” as helping someone waste time and money on something that won’t help, then yes.

:shrugs:

Regards,
Shodan

Yeah, the compassion just oozes from your every pore. That must be two words we now define differently - “anecdote” and “compassion.” See below for my definition of the latter:

It would be much ore intellectually honest for you to say “I have no compassion for her, she’s a fool.”

I have no clue about your OP request, CairoCarol, but saw you had started the thread so wanted to just say sorry to hear what your friend is going through. It sounds like you are trying to do what you can.

Compassion means trying EVERYTHING possible to find an answer to the child’s problem. You start with the traditional medical procedures, then, if the doctors can’t help, you move to the less traditional options. I think CC is looking for feedback on the viability of the less traditional options, not a lecture.

Which is what I gave her. There is no good evidence that medical marijuana is a viable treatment for epilepsy, and even the latest studies aren’t applicable because they only studied one compound, and medical marijuana from the US is not an isolated derivative of that compound.

Regards,
Shodan

When people are seeking cannabis to treat seizures, it is usually CBD (cannabidiol) they are looking for. Since it does not produce any significant high, and isn’t prone to abuse, it has been legalized in many countries and US states. it appears Australia is one such country, quite close to Bali.

As Shodan so insensitively put it, the question of effectiveness of CBD on seizures is conflicted. In the US there a sort of cannabis gold-rush in progress. It is easy to make a quick buck selling CBD online and making wild claims about what it can treat. People are trying it because it’s available and they’re desperate. Anecdotes are flying around like mad, and it’s hard to separate hype from fact.

In your friend’s situation I myself would probably not fly halfway around the world for CBD oil, but I’d consider going to Australia. I do not know the legal status of CBD oil in Indonesia but since I’m sure you’ve heard about the executions of people importing drugs from Australia, you want to be very certain about the legality before trying that.

Thank you so much, HMS Irruncible. That’s exactly the sort of practical commentary I can pass on to my friend - if nothing else, it will comfort her to know there are some options she can research.

(On the executions - yeah, those were a HUGE deal, particularly for me since I was working communications for an Australian-Government-funded project, and Tony Blair was making comments that exacerbated the situation.)

Back to medical marijuana - FTR, I have no position on the efficacy of cannabis derivatives with respect to epilepsy, but I do know that if I were a parent of a severely epileptic child, the info is sufficiently mixed that I would definitely want to explore the subject further before giving up.

Morgenstern and Wordman, thank you for your supportive comments.

Colorado is a legal recreational state. You do not need any medical reason to get some, you just go in the store and buy it. The stores that sell recreational pot will also have strains for medical uses. There are a wide variety of types from *zonk you out and put you on the couch *to just making you very happy to listen to music while mowing your lawn.

I live in Oregon, another state with both legal medical and recreational pot. They are still working out the kinks in the process. I think they may ask for ID due to limits on how much you can buy per day and how many plants you can buy per year. I will just let them work on the details until they settle. Plus I really don’t want to got to a shop in my home town and meet my boss walking in as I walk out. It would be awkward. Oregon rushed into the selling part without waiting on the details, because…tax money. Give us some!! There are already more pot shops than mini-marts in a town of 10,000 people.

So I have been going across the river to Washington for a couple years. Another legal medical and recreational state. There are no qualifications other than being over 21 years of age. Since I am obviously at least that old I just walk in, ask for what I want, buy and walk out. No identification needed at all.

I will not post a link because some here are still of the “technically illegal” camp. Just Google weedmaps for whatever state you may be interested in. They will list all the outlets, then just contact one via email to answer your questions. They will inform you about the type needed for the kid’s condition. The web sites also will have the various types, THC or CBD levels, edibles, just a whole menu on line. The Feds are not doing anything at all about this. It is like shopping on Amazon except you still can’t get it UPS or FedX.

My concern. Doesn’t Indonesia have some really arcane and severe pot laws? Like prison for years, maybe death? I would strongly suggest that you find out the information you need and have your friends transport the kid to a legal area rather than transporting pot into Indonesia.

I’d like to add information from someone with personal experience in this area–myself.

I had regular epileptic seizures starting at about age 11.
I had to take Phenobarbitol and Dilantin daily to control them.

Then I went to college in the 60s.
If you’ve ever seen the movie “The Boy in the Bubble”, starring John Travolta, I related to that character. I decided I didn’t want to live my entire life as some kind of semi-invalid–so I stopped taking my medication.

I didn’t consult with my doctor or anything, I just stopped.

Coincidentally, at the same time I started smoking weed. Surprisingly, my seizures stopped. They only returned when I went home for the holidays, and couldn’t smoke as freely as when I was at school.

At the time I did not draw any correlation between these things. It was only many years later that it occurred to me that smoking weed was a factor in the cessation of my seizures.

Over time, the seizures diminished and finally went away completely, even when I hadn’t smoked for a long time.

Now, this may be dismissed as the dreaded Anecdotal Evidence. I call it Personal Experience.

Anecdotal doesn’t mean it’s wrong, it just means that it’s not enough to say it will work for everybody. Much of what we know about cannabis is necessarily anecdotal because it’s been so difficult to conduct research on it. Anecdotes tend to have a positive bias, so prohibition has the ironic effect of creating demand for medical marijuana. I would go so far as to say medical marijuana would be an obscure phenomenon if pot hadn’t been criminalized for so long.

Yes - I don’t know about pot per se, but generally speaking Indonesia’s drug laws are very harsh. In addition, chances are quite high (heh, no pun intended) that travelers would need to pass through Singapore in order to get into Indonesia, and the laws there are exceptionally harsh.

My friend is primarily considering whether it would make sense for her to plan a stay in a place like Colorado. Obviously, if she found out they could somehow do trials in Indonesia, that would be excellent news, but I don’t think she anticipates that happening. At the moment she is gathering as much information as she can to find out what, if any, options she has.

I’m not aware of any medication that “works for everybody”. Not even those that have passed double-blind, placebo-controlled clinical trials.

True enough. I just meant that anecdotes aren’t statistics. It worked for you, but that doesn’t mean we can say with confidence that it will work for X percent of people with your symptoms. Even if X is just 10%, it’s a more helpful data point than “this one dude I know.” Unfortunately the drug prohibition bureaucracy has suppressed these kinds of studies for a long time, but things are starting to change.

Colorado is a neat place. It would be fun to go there for some skiiing or to see a grizzly bear or other stuff they don’t have in Bali. I’m sure Australia also has many educational and entertaining vacation opportunities.

But your friend should understand, the medicinal oil that’s being discussed as an anti-seizure medicine isn’t the stuff you smoke in the stores. Also, it’s very early days in cannabinoid research. You can’t just hit any head shop and find this stuff.

Here’s an article from the New England Journal of Medicine, from 2015, discussing the potentials of cannabinoids as epileptic treatment -

http://www.nejm.org/doi/full/10.1056/NEJMra1407304

That’s not the full article, but it will give your friend the info to take to the library.

Shodan’s not wrong. It’s too soon to know if any of this will pan out. OTOH - it may be a godsend. It’s good that research is beginning in this field, but it’s just a beginning.

As a dataguy, you should understand the value of data points that are 1. Uncorroborated and 2. Solo. Your lived experience matters but there’s no way for any other individual to draw a usable pattern from it.

“Anecdote” also means, in terms of medical studies, “it looks like this happened,” but we weren’t controlling all the variables.

CairoCarol, you friend might want to explore the ketogenic diet. This diet is prescribed by doctors in children’s hospitals across the US and in other countries for hard-to-control epilepsy. It sounds like a fringe treatment, but it is actually a standard tool in the treatment of epilepsy anymore. I am not suggesting your friend try to administer this herself, because it is not a balanced diet, and children on it need prescription supplements. But if she can make a trip to Colorado to go to a pot dispensary, perhaps she can find a way to get an appointment at a children’s hospital some place that will prescribe the diet.

Sure, I understand the value of controlled trials and the data they provide.

However, a couple of points:

  1. There will probably not be many large-scale clinical trials that focus on the whole cannabis plant.

Most, if not all of them, are testing some component (THC, cannabidiol, etc.) The objective being to find some cannabis-based substance that can be patented.
The whole plant cannot be patented. If it cannot be patented, drug companies will not spend the money on trials.

There are already cannabis-derived drugs, for example Marinol. They have not been shown to be as effective as the whole plant.

  1. Clinical trials are most valuable when the substance being tested is potentially harmful.
    Cannabis is non-toxic in humans. You can simply try it. If it helps, fine. If not, no harm.

Umm, something just occurred to me. When I was in high school, a friend of mine who was half-Japanese got really sick when he tried pot for the first time, and at the emergency room, we got told the sometimes people of Asian descent can be allergic to pot.

Now, coming from a SDMB post, that is anecdotal, but it might be worth researching.