An overview of Alex:
- Alex is our son, born in 2001.
- Alex was diagnosed with Tuberous Sclerosis when he was six weeks old.
- He has a history of seizures, autism, and self-injurious behaviors.
- After his fifth birthday, his self-injury went from moderate to extreme, and by 2009 he would regularly beat himself bloody.
- In early 2010, we tried medical marijuana for him.
- It was more effective than any other medication (and we tried MANY others: zolaft, risperdal, ativan, valium, naltrexone, and more), and showed great promise – see his before and after videos.
- But we didn’t know how to consistently get him to take it
- We didn’t know how to measure out a dose
- We didn’t even how to get a steady supply
- Ultimately, we failed.
- Alex now lives away from home in a state-contracted facility.
- While they can give Alex any medication a doctor prescribes, they won’t give him marijuana.
- Since he left our care, he’s been on Haldol, Ativan, Valium, and at least one medication that could kill him (Amitriptyline) if the dose was just a bit too high.
Cannabis prohibition took away Alex’s safest and most effective option by denying us knowledge of how to give it.
To put this in terms that may be easier to understand, imagine you need a painkiller for your child.
- On the shelf, you see Tylenol, Advil, Aspirin, and Ibuprofen.
- None of the products has any directions – they just say, “Good luck!”
- You know from research that each product acts differently, but you don’t quite know what those differences are
- You also know from research that dosing for Tylenol isn’t going to be the same as dosing for Ibuprofen, and so forth. But you don’t have anywhere to turn for suggested dosage for any of the products.
- Nobody you’ve ever met has given any painkiller to a child, and can’t offer you help
- Your child can’t tell you if he feels better
Which do you choose? How much do you give? At this point, is it even a good idea to try out these unknown medications?
This is why prohibition hurts children – we do not have the information we need to properly administer medical marijuana. We know it’s safe (an overdose results in sleep, unlike “safe” products like Tylenol, which can kill). We know it’s been effective on multiple occasions. But we don’t know the right form, the right strain, or the right dosage to get consistent results.
Marijuana is controversial because its long-term effects on a child are believed to be unknown, and possibly risky.
Alex’s other medications are exactly the same – nobody has data for how long-term use of Risperdal affects a growing child! And when “death” can be listed as a possibility for some of his legal drugs, it’s hard to believe anybody can claim marijuana shouldn’t be an option.
Please check out site: “autism, self-injurious behavior and epilepsy”, the family has a child like yours. Also have you tube videos under severe autism and self injurious behavior. Your child is very similiar.
Imagine you need Tylenol for your child, but:
Shouldn’t that read cannabis instead of tylenol? Change all your tylenol’s to cannabis.
Kerry, my goal there was actually to try and explain in terms that parents who haven’t used marijuana would understand. I have reworded it a bit to hopefully make it more clear. The general problem with cannabis (or rather, prohibition of cannabis) is that nobody really knows what to try. There’s no good research out there because of its state as a schedule 1 substance. This makes it very frustrating to try and dose when we have no idea what is going to help the most, how much to give, how often, etc.
To Dad: my heart goes out to you. Painful as that is for me, I can only imagine your heartbreak. These kinds of stories are why I try to inform people that cannabis is a POSITIVE thing. No matter how you try to justify keeping it illegal, all the reasons for doing pale in comparison to the GOOD it could help humans achieve. Everyone always wants to write it off because of the drug factor. Those people can stick that excuse right where the sun don’t shine, because they’re usually the ones saying that “oh alcohol and nicotine and prescriptions are legal, we don’t need anything else cluttering up people’s minds”. Uh, hello, cannabis (or rather, hemp) has so many possible uses that it makes THEM look like morons for only talking about the drug factor. If anyone that DOESN’T smoke would take pot activists seriously, instead of just brushing them off as potheads (just so you know, in actual intelligence tests, most of us “stoners” that talk about this stuff would score above the sober folks or ones that use nicotine or alchohol, simply because cannabis is not a poison), we could actually get something done. Maybe if we had almost everyone in the country behind this and started boycotting the companies in our way, the government would start listening. Until then, we fight a sad battle.
I agree 100%. I don’t use pot, but I am not sure people believe me when I talk about it, which is really unfortunate.
As for getting companies to stop controlling the government, I think you should check out http://www.rootstrikers.org/ – their goal is to get all lobbying stopped, which I think could make a big difference with cannabis (and many other things).
I am a bit confused, are you allowed to remove your son from this State facility? If you are, get him out and consider moving somewhere like Colorado. If they are holding him “hostage”, its time to get him out by any means necessary. Cannabis does work and if that is what is going to give your son a better life, then get it to him. Live Free or Die….
It took a while, but I finally got the long version of why this isn’t as easy as it sounds – just check the post out at http://www.alexneedshelp.com/whats-the-problem-why-cant-alex-just-come-home
Dad, Try some before you give it to your child. Then you can have a sense on how it might effect him. I assume you give him edibles. Just test it out. You have no hesitation about taking a couple of advil do you? If a doctor prescribes anything for my child, you know I’m going to take the first dose. You have to, to be able to understand the effects.
I did try it early on and the dose that made me completely freak out (way too much – I was hallucinating) was only enough to calm him down, and only sometimes.
Unfortunately his brain just isn’t wired the same as mine. He can take more Ativan than most grown adults and still be screaming. The ER doctor told us that if he hadn’t seen it firsthand, he never would have believed it possible.
I really hope your child is allowed to use the marijuana to control his seizures and self-destructive behaviors. I know that it is allowed for use by other kinds of patients and clients. If it works, he should have it. Best wishes.
I completely understand. I have a daughter, 12, also named Alex ,who was diagnosed with TSC at a month old. As the years have passed, we have dealt with crazy fits of rage, being kicked out of schools, self injurious behaviors, practically psychotic fits. We have tried an array of medications, all of them producing minimal improvements with massive side effects. The schools don’t understand. The counselors don’t understand. The doctors are baffled. I have been saying for years, it would be so much easier if she could just use marijuana. I know it would relax her, control her rage, and help her focus. I wish the government left these choices in our hands. My heart breaks for her every day.