Wednesday, July 1, 2015

What the Medical Marijuana Debate is Really About

The debate goes on - yes or no to medical marijuana?

 As a parent who is currently giving my child medical marijuana for epilepsy it's hard for me to understand the resistance. The answer seems so obvious to me, why wouldn't we try this???

Julia Anne, age 8, medical marijuana for 6 months
But yesterday after reading responses to another mom's blog on this topic, I started thinking that maybe the resistance is because people misunderstand our cause and misunderstand what this whole debate is really about. That is the only way I can make sense of the people who are looking in from the outside shaking their heads and poo-pooing this treatment option for reasons that seem either irrelevant or ridiculous to us parents. The only way these comments make sense is that these people are entirely missing the point.

And the point is this - this debate isn't even about marijuana - it's about our kids! And it's about epilepsy! Desperate parents looking for additional treatment options for our precious kids suffering through epilepsy. Period.

If you think those of us who are speaking out and fighting this marijuana fight are doing it because we love marijuana so much, you are wrong. WE LOVE OUR KIDS! And therefore we love anything that helps our kids. And right now marijuana is helping my kid. If it were kangaroo dung that was shown to stop seizures then you can go ahead and consider me a lover of kangaroo dung.

There are some who have suggested that we marijuana parents aren't being honest about whether or not marijuana is really working for our kids, that we are enhancing reports on it's effectiveness and lying about seizure control. I find this to be so insulting. And again the only way I can make sense of someone saying something like this is that they fundamentally do not understand what it is like to have a child with epilepsy. They do not understand that this whole movement is about saving our kids from a devastating and deadly condition and that marijuana just happens to be one option that is showing some promise in helping our kids.

I know people who have moved across the country to Colorado and are camping- yes, camping - in order to try this treatment option for their child. Do you really think they would chose to camp over being in their own home if it wasn't helping? I know families who are living separately with one parent in their home state working while the other parent is here living in temporary housing with their child because medical marijuana is the only thing that has reduced her seizures. You think people would do that out of loyalty to a treatment option?  No, they do this for the love of their child. You don't make this type of sacrifice for a lie.

When or if marijuana stops helping Julia, my allegiance is to Julia, not marijuana. I won't stick with something that doesn't work because I so badly want her on marijuana -that doesn't make any sense. What I so badly want is for her: 1. Not to die from a seizure. And 2. Not to be miserable from the side effects of the drugs we give her to stop the seizures.

So if marijuana isn't working or stops working we will move on to the next thing that might help her. But we will also keep fighting for every other family to have the chance to find out if it might work for their child.

Seizures are tricky folks, and perhaps that is another thing non-supporters don't understand, seizures keep finding a way back. Especially for the population I am talking about here. I'm not talking about a child who had one seizure as a baby because of a fever. I'm talking about kids who have been suffering from seizures daily for their entire lives. For these kids, their seizures are relentless and they keep coming back.  Therefore we HAVE to keep trying to find new ways to fight them off. In this battle against epilepsy the seizures keep coming back and we keep working to fight them off. There isn't a cure, there is only treatment after treatment - and so we need a long list of treatment options. We need a deep bench. I believe that everyone in this battle should have the right to add marijuana to their list of options - again, not because we love marijuana but because we love our kids.

The only reason we are talking about marijuana with the general public is not to change your minds . about it, I honestly don't care if I change your mind about marijuana - feel the way you feel about it. No, the reason we are going public with our stories is because we have to try to change your mind about allowing it to be an option for families like ours. I do not think your dislike or doubt or need for more evidence should to have the power stop families like ours from being able to try and save our child. We want the ability to try. That's all we are asking for.

Haleigh's Hope: 23:1 CBD to THC

For those of you claiming you need more research to be convinced, we don't have time for the years and years of research you require in order to give us your blessing on this issue.  And what will years and years of more research do for us anyway if you really think about it? It will give us a big fat inconclusive maybe. "Maybe this drug will work for your very complicated child." Which is exactly what we have now with every other drug out there to treat epilepsy - we have a "maybe."  Maybe Keppra will work, maybe Topomax will work, maybe Sabril will work, maybe Banzel will work, maybe Valium will work, maybe Lexapro, will work, maybe the keto diet will work, and on and on and on - these options have years of research behind them and guess what we still get... a maybe.

So why would you require us to sit around twiddling our thumbs, watching our children seize, their lives at risk with every single seizure, just for the research to confirm what we already know - everything is a maybe.

So please, when you hear this argument and read our stories don't make it about your personal feelings regarding marijuana - make it about these kids, make it about access to treatment,  make it about the right to try, make it about parents trying to save their kid's lives. And if you are brave, maybe for a moment make it about you or someone you love being in our shoes. Wouldn't you want people to give you the right to try?

You don't have to love it, you don't have to agree with it - but please do not block it.


  1. Absolutely agree with you, I haven't even read any of your other posts yet. Medical marijuana is doing such amazing things for so many people yet people still believe that pumping kids full of drugs that law says is ok is better? I just don't understand, usually its people that don't have children that need it that judge others who do, and if those tables ever turn i bet you they will try anything to help their children too. Good on you. <3

    1. Thank you for taking the time to read and comment!!! I do agree it seems that people who are experiencing epilepsy or other hard to treat conditions are much more understanding of this approach. My hope is by telling our story we can keep changing minds one by one! Thanks again for stopping by and for your support!

  2. Well said. The only thing I have against it is the way some people take it as a joke.

  3. Question about testing. Has marijuana already been through similar tests to what is required for any medication to pass through FDA approval, and the only issue holding it up is that it is marijuana? Or has it not had the studies (issues with the FDA approval process aside) done yet? I actually don't know, and am curious. In my opinion so long as the studies have been done and the results passable by FDA standards, I'm 100% behind allowing use now. However, if it hasn't been through that, I would want it to go through that prior to general market official medical use, just like every other promising medication. True, marijuana has been used for years without major side effects, but in order for it to have status as medication, I think it needs that.

    I also think it should just be legal, so it would be available in the meantime for use as an off-label medical treatment. But for it to be considered officially as a medical treatment (paid for by insurance, prescribed by doctors-not just recommended, but prescribed, etc) I think it should be FDA approved.
    From what I've seen, cigarettes and alcohol can cause just as many issues, maybe even more, than marijuana, so I consider the restriction pointless. Though I really can't stand marijuana personally- second-hand smoke from it gives me a nasty headache, I've read studies that show a real effect size, and know people (inc. family) that use it medically who have had great results.

  4. Wonderful informative post straight from a mother's heart. Like you say...Some kids don't have the luxury of waiting around for more research to be conducted. My daughter has been suffering with debilitating, uncontrolled seizures for 15 years. Her cognitive functioning, memory, speech, happiness, and overall quality of life are declining drastically and quickly. We are waiting for Gov. Cuomo to get off his butt and sign our commpassionate care act bills that will allow us to at least try medical marijuana to see if it would help her. I honestly believe #medicalmarijuana is #BethanysLastHope for a happy, healthy, seizure free life. I've written a few blog posts and created a video in my attempts to raise awareness and #FightForAccess

  5. If it were kangaroo dung that was shown to stop seizures then you can go ahead and consider me a lover of kangaroo dung.

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