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.
66 thoughts on “About Alex”
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.
What are you getting at?
She actually wrote: “…imagine you need a painkiller for your child”. PAINKILLER.
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
Move him to Colorado and get him on Charlotte’s Web. And Haldol? God help the poor kid. This pathetic facility will do him a lot of harm.
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.
IMPORTANT re dosage:
NEVER has there been know to be a toxic dose. Freaking out is the only real negative side effect, obviously such a concern pales in comparison to your child’s issues. His normal state is freaking out, relief from that is very likely all he can get by moving his state of mind towards the cannabis zone.
You, however, have a much more brittle (read well practiced) view of the world.
When he freaks out and sees things that aren’t there, that’s too much. On the other hand, this will probably never happen. Back in the day when I took a lot of hallucinations, I almost never “saw” anything abnormal, but I did learn a lot about how illusions happen (mainly because no one ever programmed your mind with an particularly accurate map of reality to begin with). What was more common for me was ridiculous leaps of logic, very occasionally leading me too fairly extreme, though temporary, misunderstandings of what was going on around me. The lesson, for me at least, was that hallucinations don’t happen in your eyes, they happen in your mind.
THC tends towards the unlearning of unwanted or unneeded behaviors, emotions, and thoughts; esp. according to recent understanding of what it does to the brain. Long standing anecdotal evidence shows that it can also dull the impact of deeply unsettling memories, such as those of PTSD sufferers. Most of your own behaviors, emotions, and thoughts are probably unneeded, unwanted, or just plain maladaptive (in view of actual objective reality, were humans capable of knowing what that is). Confronting such profound changes, a brain will often distract itself by any means necessary.
It is a profound need of the mind to believe it’s map is similar to reality, when confronted suddenly with an extreme challenge or anomaly it WILL distract itself one way or another. Creating meaning is what it does, whether the input makes sense or not. When the sense input, or the actual brain chemistry, creates signals that make no sense in any previous frame of reference, the mind will still tell a story about it and believe that that story makes some kind of sense.
There are those who study meditation who say that severe hallucinations can result from the mind attempting to derail it’s own efforts at being empty, or confronting the core of it’s reality. Some say that such distractions being completely absent tends to point to a lack of real success (I say it depends on how badly you NEED meditation, and how much it is just icing on your cake).
The cost does make it prohibitive to explore what the top end of your son’s dosage should be, but logic clearly favors the concept of enough is enough.
The minimum effective dose should be pursued for many reasons with any drug. The fact that an overdose is not possible pales in comparison to the stigma of being in a “stoned” state, esp. for children, who are sensitive to variations informing their self image. Especially for those with problems forming a normative self image, which autism is, somewhat, by definition.
oh yeah, there is one more good reason to settle for the minimum effective dosage: It does seem to do most of it’s work through disabling unused memories, i.e. it does help one to forget.
This is not a good thing for young brains that have a lot more patterns stored than they should be using.
In other words, while I cannot tell for sure from experience because I have always been forgetful, it seems that your boy does not need any help with not learning, which is what I think would result from unlearning things that your brain is not yet ready to decide the importance of.
(The more I think of this issue, the more interested I become in the information we could lean from your son’s tragedy and similar anomalies of human brains or minds. Why does THC help? or is it some other cannabinoid? Maybe he’s recording too much data?
I just read Wikipedia on ” Tuberous Sclerosis”.
Very interesting experiment nature performs for us, with an unfortunate amount of variation (for your son) in how many ways it can cause such symptoms and thus, also, in the many ways that canabinoids may be helping.
If and when you can, it would be good to compare different canabinoids. The first step would be to see if something like marinol helps. This would point towards, or away from, THC being the active principle; which would probably be informative as to causal agents of symptoms.
In any case, knowing if it is THC, or one of the other canabinoids would only help asses his present state, which will probably change, but it would help decide what form to give him.
If the THC is not effective, or not as effective, you can start trying to find the strains that are most effective, and then try to find what cannabinoids these strains may be known to have more, or less of.
This would not be an easy thing, esp. with daily variations in life making every experiment unscientific. The hardest part is to find the balance between a proof-seeking more objective and logical point of view, and the sufficient anecdotal evidence feeling that will have to suffice in the end. Relying too much on either state of mind definitely increases your risk of an inaccurate evaluation.
In the very long run this process should/could be gone through more than once, as his current state produces varying symptoms. When a new need arises, or when efficacy falls off, it might be time again to try the more generic blends of cannabinoids in less inbred lines VS Marinol.
One more thing: As long as you buy it “on the street” you will never know what strain it is, nor will you ever be able to be guaranteed to ever get the same strain twice. If you get to know the right people, who know the right people, the illusion that you can get a reliable supply of a known content may last for years… but it would be an illusion (unless you grow it yourself).
For this reason, I second the move to CO, Amsterdam, or some other medical/legal marijuana state.
Of course, all these issues are moot as long as he remains where he is and under current law in your state.
You gotta do what works and is best for your child, and if it’s marijuana than so be it, nobody should ever try to tell you how to raise your child, I respect your decision and wish your son the best, marijuana has never killed anyone it actually helps people, it’s also all natural nothing added to it like other drugs.
What the hell state are you in? Any doctor who is familiar with autism knows this. Ativan is used in massive does in Autism Related Catatonia.
You take a medication prescribed for your child when you don’t have the issues your child is having? You can’t “test” a dose when you aren’t having the symptoms or problems your child is having. It will react differently with you than it will for them. That is not a good way to determine whether the medication is “safe” for your child…
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.
Dad, I would just like to recommend the use of THC oil (bho) to attempt to alleviate some of the symptoms associated with your son’s autism, I myself have a mild case and have experienced huge success in it’s mediation as well as mediation of persistent acute dystonia. The difference between using this active (decarbed) concentrate and normal plant matter is quite distinct. It also allows for more precise titration of dose and can be either vaporized through a pipe or solved in an ethanol or glycerin tincture for easy use. Best of Luck.
I’ve read that Tylenol blocks the CB1 receptor and stops cannabis working properly.
Now, isn’t THAT interesting ? No wonder Tylenol seems so much more aggressively advertised and preferred by doctors over the other NSAID’s….or so my experience has been. Rot the liver and either die or pay MORE money for a liver transplant (if even possible), doctors make more money, I/YOU/WE pay the price in suffering. Gotta love this country.
If good ol’ Mary Jane will help young Alex here, I’m all for the stuff. My heart sank for Alex as I watched the videos that were available. But we must all suffer, simply because somebody didn’t want hemp to be used in place of paper.
I’d personally like to try it for breathing issues, blood pressure, and pain, and there are a few people in my life that have/have had cancer who might benefit from it as well. Lift the draconian laws, and let “we the people” have the natural plant that’s been around for thousands of years that just might offer a cure. Oh wait, we can’t have THAT…it would cripple the pill-pushing industry.
If using edibles something fatty eaten before hand will improve absorbtion by stopping the vast majority of the cannabanoids being metabolised by the liver. In an experiment on fasted dogs as little as 7% of the cannabanoids made it into the body whearas after a meal this figure is 40%+. Someone I know that using cannabis oil for their condition said that they take a tablespoon of coconut oil before taking the oil and that does the trick you might melt the coconut oil into a warm drink. I’ve also read that grapefruit, milk thistle, msm, ripe mango, ginko gilboa and curcumin with piperine all help the “high last longer” most by inhibiting metabolism of the cannabanoids except mango which apparently helps some cannabnoids across the blood brain barrier. Very best wishes Dominic
Parents of Alex,
I feel for you, I was diagnosed with this TSC and Epilepsy @ age 3. Have been on several meds. Use to have bad seizures during daytime growing up, now have switched to night time while sleeping mainly…. Kick the ___ outta my hubby sometimes… hehe, he has turned me onto wanting to know more about this.
We are both in Oklahoma now and are concidering moving if needed to try this treatment.. They have tried alot on me. I have TUMORS thruout my body and cysts also on overies, Ringing in ears, off balance now so am on vertigo meds.
I say go for it – DOCTORS DON”T KNOW EVERYTHING and you only live once!
High 5 to Alex, You have a special one in your life and enjoy every bit of it…
I have 1 Daughter that I have passed mine down to, and she has heart problems, she is 23 now, my other daughter seems fine so far so good…
I am not working now, because of this condition – advise of doctor…. and good thing… I sleepwalk with it.. and have fallen…
GOOD LUCK, and Will keep in touch with this site…. thanks for listening to my site…. OK – Patient…… 🙂
Thanks for sharing your story! Honestly I’d say you should give it a try, too. In your situation you can probably try it out for a week and know pretty quickly if it’s going to help you. I only wish Alex could give us feedback (and use it regularly). You could try smoking it just to see if it helps, and then if that works, invest in a good vaporizer so your lungs aren’t getting all mucked up.
If you move anywhere, I’d suggest Colorado now. Great medical laws, and of course the recent semi-legalization of it.
This is a very hard situation! I love this kid. He breaks my heart everyday I see him SIB!
I think Medical Marrinol is the best for him, other medications will not work! In the best form! he needs it! Not surgery, Due to the fact of SIB is complex in the process. Will he have to be restrained to overcome brain surgery, or will he have to be sedated?
Honestly, I have no idea how they’ll deal with his surgery. We’ll be figuring that out as we go, alongside his group home.
Frankie and Dad,
Marinol is a very poor choice for this poor child’s condition. As Dad so eloquently pointed out, there is a dearth of published scientific research on efficiency of dose, plant genotype and chemotype (re: so-called “strains”), route of administration (e.g., edible vs. injection), efficacious compounds (i.e., secondary metabolites found within cannabis – which include all cannabinoids like THCA-A) with respect to Alex’s condition, et cetera.
Therefore, it’s important to offer “whole” plant (read that as ‘whole inflorescence’) extracts instead of simply synthetic THC (i.e., Marinol). We don’t know what secondary metabolites (or other plant compounds), and synergies, potentiations, and antagonisms thereof, are providing relief for poor Alex and Dad’s family.
There are other important factors for Dad to consider when choosing the genotype, growth, extract and route of administration of the plant material – most of which are out of scope of my reply to your suggestions.
Dad: If you would like further information I am more than willing to provide you a lot of information in this area. I’m a plant physiologist and I specialize in growth, breeding, and administration of Cannabis spp. Please e-mail me if you’re interested, I would not charge you a dime for my consultation services – I would do it gratis to help your family and Alex.
Furthermore, I very highly suggest you contact my peers and friends over at Skunk Pharm Research, LLC in your home state of Oregon. Skunk Pharm Research, LLC in my educated estimation, is the best resource you could possible find, in the United States and abroad, to help you and Alex with his cannabis based medicine. Skunk Pharm Research, LLC focuses on extracts and human medicinal use, and research thereof, as well as teaching the science and their methods to others (like you). They will be able to help you better than anyone else, anywhere, for Alex’s extracts. Please contact them and mention Graywolf in your e-mail (that’s the Internet pseudonym of one of the main people over there), and tell them Spurr (my Internet pseudonym) sent you. I will also e-mail Graywolf directly, and ask him to contact you. http://skunkpharmresearch.com/about/
Below, you find a few published papers regarding what I wrote to Frankie. I didn’t properly format these references because they’re easier for laypersons to read (generally) when they’re not properly formatted (I can provide you the full text of these papers for free):
“Cannabis and Cannabis Extracts: Greater Than the Sum of Their Parts?” McPartland, J.M. & Russo, E.B. Journal of Cannabis Therapeutics (2006),1, 103–132.
“Cannabis is more than simply ∆9-tetrahydrocannabinol” Ethan B. Russo and John M. McPartland Psychopharmacology (2003) 165:431–432
“Cannabis versus THC: response to Russo and McPartland” Mahmoud A. ElSohly, Stephen R. Wachtel and Harriet Wit Psychopharmacology (2003) 165:433–434
“Taming THC: potential cannabis synergy and phytocannabinoid-terpenoid entourage effects” Ethan B Russo British Journal of Pharmacology (2011) 163 1344–1364
This is excellent information, thanks! I’ll check out Skunk Pharm for sure.
My son Nooh Ahmed now 9yrs is a tsc patient since he was one month old. Pls advise us on cannabis oil if it can help him as he has been badly affected by seizures in his early yrs
In my previous message I referenced a published work by McPartland, J.M. & Russo, E.B. as published in 2006. That’s incorrect. Their work was published in 2011.
Damn typos, I’m getting old, I guess! That work was published 2001.
(Dad: Please feel free to edit my original message to reflect this correction, and, please feel free to remove these two latter messages.)
I just learned about Alex online and I cannot imagine what you and your wife are going through. You are extremely strong and patient people and Alex is lucky to have wonderful parents like you. Giving Alex the medical marijuana was your best option and I commend you both for being brave enough to go public with it. Don’t let any of the naysayers bring you down. You are doing the right thing. Maybe, down the line, there will be a better option but for now you guys are preventing him from injuring himself which is most important.
Good luck to all of you and my thoughts are with little Alex. He’s an adorable kid and a good person.
I’m so glad that marijuana has helped your son. I think it’s such a sham why it’s illegal, it has many proven uses and can help so many diseases. But if it was legal then governments would lose out on medicines and fuels that they all have shares in. Alex is a beautiful boy, anything that can help make him smile can’t be bad!
I can’t tell you how the photo at the top, on the right breaks my heart. It must be terrible to see your child suffer like that, and I hate that the people in this country are so close-minded about marijuana. Medical marijuana is not even the same as smoking a doob on the street, yet there are still people who would judge and deny you the right to help your child. As parents, I can tell you, my husband and I would do whatever we had to in order to protect our child, even from herself, and that includes bending rules. I hope you guys find the help you need to get you through this.
I also have a child who has been diagnosed with TSC, (while i was pregnant, from sonogram), he is now 10yrs old and well i guess with all the new uses their discovering for medicinal and if this is what his doctors are recommending then by all means. My son also takes several seizure meds and a medication for adhd. with all this media and webbing i wonder if your family has been in touch with the Tuberous Sclerosis Alliance, they are on Facebook and generally have local groups in your state or close by. They can offer support, advice, etc. God Bless and well Wishes.
I don’t mean to be callous, but how does the group home help Alex and provide for his needs? I know he is young and I just wonder how they meet his need for love and affection at that early stage in life. I am sure it was exhausting mentally, physically, and emotionally for you and your wife…I just think of a group home as being a lonely place for a young child.
My heart goes out to you and Alex! We’ve never supplied oil to an autistic rage patient, but we had outstanding success with a raging Alzheimer’s patient. If you are interested in Alex trying our sublingual free, feel free to contact me
My son Nooh Ahmed now 9yrs is a tsc patient since he was one month old. Pls advise us on cannabis oil if it can help him as he has been badly affected by seizures in his early yrs
Here is a little info for you dad. There are a lot of helpful strains and people who are knowledgeable on the subject and willing to help. Charlottes web is a very good place to start. And I would try to avoid edibles they are a crap shoot since the makers often don’t know the amount of thc in the edibles themselves. I would look onto tinctures.
My heart is just breaking for him. Please please please tell me you have gotten him out of that facility. Those places treat them terrible and he will be able to hurt himself there way more than in a loving home. Just because he cant control his behavior doesnt mean he doesnt know whats going on. It doesnt mean he doesnt have feelings. Oh my gosh it must have killed him to be left there. I cant imagine the nightmare he is going through. If you know what works do it!! Get him and move to Colorado!! They are experts on weed there.
Yeah and I’m sure it hurt them just as much to have to leave there child there.
My heart absolutely breaks for you, your family, and your child. I grew up with a sister with disabilities, not as extreme as your son’s, but I saw what it put my parents through and how they constantly had to fight the system. My sister spent a good deal of time in group homes and residential facilities and my parents had to fight them tooth and nail to work towards getting anything accomplished. My parents went to the ends of the earth and back for my sister and they did anything they had to, to improve her quality of life and get her the assistance she needed. Anyone who makes negative comments about providing your son with marijuana truly doesn’t understand what it’s like to have a child with disabilities, a child who has a problem that you don’t know how to fix. As a parent, seeing your child in distress and having no way to fix the problem is heartbreaking. The fact that you have found a way to relieve your son’s pain and make him a happy child once again, that is all that matters. He isn’t smoking the marijuana so there is no worry for long term effects on his lungs and by ingesting marijuana Alex is no longer hurting himself or spending countless days and hours upset and in pain. At the end of the day, it’s about Alex’s quality of life and marijuana has significantly increased his quality of life. As parents you should be so proud of yourselves for all that you’ve done and how hard you’ve fought for your son. I wish you all the best!
The lethal dosage of THC (LD50 – the dose that kills 50% of test subjects) is 35mg for every kilogram that the subject weighs – assuming Alex weighs around 75lbs (34kg), you would need 1190mg of THC for a lethal dose. I wouldn’t recommend going anywhere near that obviously, but you would be safe playing with dosages in the 20-100mg range and seeing how effective they were and going from there.
I’m on amitriptyline and I’ve had my fair share of side effects. Can you explain (or point me in the direction of someone else explaining) how it could kill him? Are you guys talking about the increased suicide risk?
Just out of curiousity, and I know it’s a huge undertaking, but have you guys considered relocating to a state where cannabis has been legalized?
Oops, got the quote wrong. I meant to quote this part:
at least one medication that could kill him (Amitriptyline) if the dose was just a bit too high.
Marijuana has it’s place in the medical field,it’s being proven. It isn’t as harmful as the ‘drugs’ that Dr. are prescribing for diseases and disorders. These parents are absolutely doing whats best for their boy. No one else is entitles to an opinion about this. So stick that in your pipe and smoke it (Y)
hope you get this,saw your old tv bit Chanel 12. I have a nonverbal autistic …could we chat some time.im in Washington .thanks Donovan