So many people lately seem to be coming forward with these amazing stories of how marijuana helped their autistic child. I’m truly happy for these people, but they’re only telling one side of the story. They succeeded. For whatever reasons, their endeavor paid off and made their lives better.
We don’t have this kind of success story to tell, and I think that’s exactly why our story needs to be heard.
Alexander
My son was born almost nine years ago. He was diagnosed with Tuberous Sclerosis, a relatively uncommon disorder that varies wildly from person to person, at just six weeks old. In Alex’s case, the most noticeable symptoms it caused were seizures and autism.
The seizures have been treated with various medications over the years, but the real problem we faced (since he was four or so) was the well-known situation of autism rage. Specifically, he would hurt himself. At first, Alex was happy most of the time. As time passed, his happiness became less common, and the self-injurious behaviors became the norm. To paraphrase from multiple specialists who have helped us over the years, “autistic children sometimes do this, and we don’t know why.”
We talked to behaviorists and a psychiatrist. We tried at least one medication from every family of drugs the psychiatrist felt could help this kind of condition, including Zoloft, Risperdal, Naltrexone, Ativan, Valium, and finally Haldol. Nothing but the Haldol ever really helped, and that’s only because it was a huge dose meant for short-term control — it did the job, but also turned Alex into a zombie.
One last hope?
Late in 2009, we realized we could no longer take care of our son. He was too strong and beginning to get so dangerous to himself and us that the only way we could restrain him was by putting him or ourselves at risk. He bloodied his face regularly, gave himself a black eye a few times, and busted open his lip at least once. (See our videos for some really gruesome footage of the intensity of Alex’s rage)
The thought of letting somebody else take care of Alex was too much to bear, so my wife started doing research on what we could do to help him. We found that there was a possible connection between his Vagus Nerve Stimulator (http://en.wikipedia.org/wiki/Vagus_nerve_stimulation) and psychotic rage, so we pushed hard and eventually convinced the doctors to turn down the intensity of the electric current sent to his brain. After that, his seizures came back, and we had to crank it back up because the one episode was so intense it required an ER visit. Worse still, in the days afterward, his behavior seemed to get worse. I told my wife we needed to call the state and tell them to find a place for him. I just couldn’t deal with it anymore.
Toward Christmas, she found some articles about medical marijuana and children with autism and rage. We were at first surprised that anybody would think of such a thing, but kept digging and the pieces seemed to fit. After some research on marijuana itself, we believed that we had little to lose in trying it. After all, it’s just a plant, and certainly couldn’t hurt any more than pumping the poor child full of valium, right? Scientific evidence seemed to confirm that the worst-case scenario would be an overdose resulting in Alex falling asleep. We simply didn’t consider this too great a risk.
We got his medical marijuana card for the seizures. The law doesn’t include autism or rage in Oregon, but his seizures were a qualifying condition, and if it worked, we could turn his VNS down again and remove some meds that have pretty awful side-effects.
Early successes and false hope
At first, we didn’t know how to give him the medication. Neither of us ever experimented with pot in our teenage years, and didn’t really care to now. We were donated some hash oil, and just made guesses about how much was a dose. Imagine being told by a doctor you had to guess at how much Tylenol to give your child…. Fortunately, unlike Tylenol, marijuana doesn’t have any fatal overdose risks.
Eventually we had some truly amazing results. We almost had it down to a science – 75 microliters of hash oil seemed to calm him a bit. 150 usually made him very relaxed, but a bit too sleepy. There were multiple occasions early on where the dose was so perfect that he became relaxed but very attentive. He explored his world with his hands, something he was very rarely able to do. His hands were the enemy up to this point. If they weren’t tucked inside his shirt, he was beating himself up. On many occasions he brought us clothing to put over a shirt to make it harder to for him to get his hands out. He had become afraid of his own body. But on those few truly magical days when we got the dosing just right, he played. He used his hands to explore. He looked at us and smiled. I can honestly say those were the happiest moments I had known in years.
We were very hopeful at this point, but unfortunately it didn’t last.
We ran out
It’s that simple. Our donated supply had run out. We couldn’t get in contact with a grower, and Oregon law doesn’t allow dispensaries (and if it did we couldn’t likely afford it anyway, based on costs I’ve seen in CA). We got a later donation of hash, but it was a very small amount and didn’t last long enough to matter. We even tried Marinol, but it was available only in capsules. I’d love to see somebody convince a nonverbal child to swallow a capsule.
Alex stopped eating, drinking, and sleeping. Multiple ER visits later, we went through the heart-wrenching process of relocating our son 200 miles from home. There was no place closer that could take him. I used up all my sick and vacation time staying at home to help try to keep him safe, using Oregon’s Family Medical Leave Act to avoid being fired (though my employer was very understanding, I was still concerned about being let go eventually).
We visit Alex a little bit, but it’s about a four-hour drive one way, so it’s averaged about once every two or three weeks. It’s nowhere near enough for a child who has no idea why mom and dad are suddenly out of his life. We’re working right now to move closer to him, but even then we will only see him a couple times a week or so. For the past five years, Alex has been my entire life outside of work. After work I’d care for him to give my wife a break. I took care of him, played with him, and slept in his room almost every single night. On weekends, it was a joint effort, but rarely did I ever get too far from him for very long. He was my world.
Being away from him is the worst thing that’s ever happened to me. We’re less stressed, we have more free time, and finally my other son gets to see me and play with me. But for over two months now I’ve had a hole that nothing can hope to fill.
Please email me your phone number, I want to get you help somehow
I’ve had simular results / experiences with my son. He doesn’t suffer from autism but has extreme anxiety and OCD issues. We have traded in all the legal, doctor and society accepted DRUGS in favor of a natural, safe and effective plant ~ marijuana! It has brought our son back from the brink and he’s thriving in highschool now. I would love to stay in touch and help you out any way I can! Please email me if you would like ~ I’m currently working with some growers in California and think I might be able to help you! Take care … don’t beat yourself up over having to resort to a residential treatment center ~ Somewhere deep inside I’m sure he knows where your heart is!
My son has similar issues and I am at the end of my rope!! My son is 16 & lives in isolation because of his social anxiety. He’s been on so many different medicines and seen so many different doctors, it’s exhausting. I will do nearly anything to help him. Any insight or guidance on where to begin would be appreciated!!!
Hello,
Oregon is in the process of validating a Medical Marijuana Dispensary initiative that could solve your supply issues. Initiative 28 is in the process of being validated to be Ballot Measure 28 for this upcoming November election. Look for it to vote this November.
Also a possibility, with help,
The Oregon Cannabis Tax Act (OCTA 2010) would alleviate any issues Medical users currently have with safe access.
http://cannabistaxact.org/
Also, please look into contacting:
Americans for Safe Access: http://www.safeaccessnow.org/
I hope you find the help you need. I may be able to find you more donations to bring your son home. Please contact me.
You could grow your own.
Learn how @ Portlandsterdam University
http://pdxu.gro4me.com/Classes.htm
Please support our effort to legalize in the West:
http://vortex2.ning.com/
heart breaking situation.My thoughts are with you. my son has a rare metabolic disorder that we treated with cannabis .He was registered as the first patient under 13 in the country..he is now 25. I am an Oregon patient also. If you could get your son back we could make all the oil you need at no cost. Sorry this happened to you. I too lived this nightmare problem when my son was struggling to survive…where to get it..how to grow it….how much to use…could I afford it..avoiding the stares of doctors that hated me..it was all to much to bear. I have helped many families already. xxxxx@email.com
(email edited by admin to avoid spammers)
Boy, I could use some of that oil. I have prostate cancer and the RUN FROM THE CURE film and David Hill’s interview video both say I need about 60 grams of oil to cure it. At $45 a gram from my local dispensories, I just do not have the cash. please e-mail me if you can help. I can easily get a “cannabis card” to qualify.
There are other cures going along too, try eating aprikotseeds 10 each hour, with hbig doses og vitamin C, eat organic and cut the meat out, cancer is a fungus, fungus doesnt like alkaline diet which you should begin to have
Hi,my son have been diagnosed with tuberous sclerosis also,his case is not that severe as the child described here,but he does have seizures that are controlled by Tegritol and recently besides the tubers on his brain and kidney,they discovered a tumor also developed in the brain ,he have speech delay also. I can offer proofs of my son’s sickness and my only hope also is cannabis oil.If anyone here can help us ,please contact me at :ramona12hornaday@gmail.com.Thank you so much .
I am praying for your family … and glad to see so many people willing to help you out … I hope you get the medication your beautiful family so desperately needs and DESERVES so you can bring Alexander home and be at peace. LOVE TO YOU ALL!
Your story is a very sad one indeed. However, the title of your story is somewhat misleading as it suggests that Medical Marijuana was a failure in treating your son. After reading it, it appears that the MMJ did in fact offer some relief and that the real problem here is availability and cost. If you haven’t done so already, I encourage you to reach out to the Marijuana Community for some help. (Facebook would be a great place to start) You will find that they are a very caring and giving community that can and will most likely offer you some assistance! I wish you and your family the very best!!!
Thanks to all for your support.
Hoss, we’re going for the angle of “marijuana failed because of prohibition”, but of course I wanted a more succinct title than that, so there you have it. I don’t want to get people thinking the herb itself was a failure, more that our inability to really experiment properly caused the failure. Were it fully legal, we probably would have thought to try it out years ago, rather than when it was already too late.
I am in tears as I watch what this disorder has done to your family. My son also has TSC and although he has a lot of behavior issues I cannot imagine watching him harm hisself to such a degree. A parents absolute nightmare. Your family is in my prayers. I can only imagine the sense of loss at having to place him but I know that you did the best thing for everyone involved. God bless you
Just want y’all to know that you’re all in my prayers. I hope that you’ll be able to take in the light of Alex’s smile again really soon. Peace.
I came across your story while researching Prop 19 for my government class. Honestly, at first I was appalled that you would allow a child to partake in marijuana at all. I was almost extremely against this act–despite my dabbling in it a couple of times over my high school career–up until I did some more research. Alex, bless his heart, was made better, not worse, from this “gate-way drug” (A stupid term, yes, but hey, to please the masses.) I’m sorry you were not able to keep your son, but there’s a light at the end of this dark tunnel. keep looking for it. With best wishes-Amanda
Our story (and really, any story about kids and marijuana) is a tough one to swallow for sure. We were terrified of how our friends and family were going to react when we first decided to try out cannabis on our little boy. In the end, everybody has been very supportive. Even though it wasn’t a miracle medication for us, it’s an easy decision to at least give it a shot — and I’m still convinced the right combination of dosage and strain could make a substantial and consistent difference. But of course we don’t know what that combination is, and so far we’ve still had lots of ups and downs.
Anyway, always good to hear from somebody who was affected by our story in a positive way, thanks for the note!
Hi, I am really moved by your story. I’m a 19 yr old from Canada and my brother was diagnosed with Autism at 3 months. Over the years we have dealt with many instances of violence and tantrums, however nothing as extreme as your sons case. The main issue with my brother is seizures, as he’s had them since he was about 15. This has lead to a ridiculous amount of medication being prescribed to him. Being 19, I am very familiar with cannabis and its’ effects, and I’ve often wondered if it would calm him down, since he is fairly agitated for the most part. My mother gave me the go-ahead, however I decided not to because, while I completely with you in that marijuana would calm him down, I’m afraid of what effect it would have on his seizures. But then again, I’m also not a doctor, or anything close to one. I just don’t want to add any more medication than what is already prescribed to him. I am really touched by your story and felt like sharing mine since it is a topic that, for me, hits close to home. If by some chance you are ever in the Quebec region, medical marijuana brownies are easier to obtain than one would think. Anyways my thoughts are with you, and I hope that good luck comes your way, as I know personally that parents with autistic children are very much in need of it. Sincerely, Steven M
Thank you for sharing! I would strongly encourage you to speak with a doctor if you know of one who is both knowledgeable and open-minded. There is some evidence that suggests cannabis can actually help with seizures — I have no idea if it’s true, but in a worst case I’d be surprised if it made them worse in any way.
Marijuana seems to be safer than most of Alex’s seizure or behavior medications, and I’d expect it to be similar with your brother. It is at least worth looking into, even if ultimately it’s not worth trying.
I don’t understand why it was a failure? Because you ran out? That doesn’t mean that cannabis failed to alleviate your child’s condition. Cannabis is a wonderful miracle that has changed people’s lives for the better, (and also made it increasingly worse when they get a criminal record) We cannot let the govt continue to keep such a wonderful herb/plant/medication away from us and those we love. I can’t imagine what you and your family have gone through. Thank you so much for sharing your story. “Hemp for Victory”
You have to understand that part of the point of this article (and really, the site in general) is that we don’t have a happy ending to share.
Cannabis might be amazing, but we cannot use it at this point. We failed in figuring out the right dosing information, or maybe the strain, I really have no idea. The system failed because we had no way of finding out the best strategy for medicating Alex. And now the state and federal laws are failing us because we can’t get his home to dose him even if we supply the medication for them.
The story isn’t so much about cannabis being a failure, but about the failure of the situation. I believe it to be a worthwhile option, but we have no idea how to give it to him now — and even if we could supply him, we still don’t know the right way to give it to him to see the best effect.
I have a 5 year old son with autism. I would like to get some opinions on marijuana use. My son does not eat… he pretty much lives off of peanut butter & jelly sandwiches & chips. I have tried it all to make him eat. NOTHING WORKS! My son also has some behavior issues. Someone help me. Can marijuana help my son?
Adriana, I can’t even pretend to guess whether or not cannabis could be a good solution for your situation. I believe it to be an option that everybody should consider as no more or less valid than any other option.
It’s very hard to say if it is a good choice, because there’s so little we know about it for children. In a case like Alex’s, we had exhausted every other possibility, and his rage, even today, can get to such an intensity that it’s terrifying to watch. In your case, I have no idea whether it’s a good option, because I don’t know the situation.
I would suggest talking to a doctor, honestly. Your best bet will be a doctor who is very open-minded, but not one whose main source of income is in writing marijuana recommendations.
It also could depend on other medications your son is on. Marijuana hasn’t been closely studied in terms of its effects on children, so I’d hesitate to jump on it the first chance you get, but many other medications have very dangerous side-effects in addition to unknown long-term effects. If you’re already struggling with a ton of medications, cutting some of those out in favor of cannabis could be incredibly helpful just in terms of long-term health.
I don’t know if this helps, but I hope so.
You are wonderful parents. MMJ isn’t a cure but it can help as an ADJUNCT to other meds. But, let me stress to you, there are many, many other things that need to be checked out in your son. Please insist docs rule out any underlying medical issues fueling the self abuse. For instance, hyperammonia (as noted by a mom with autistic self injurious son on youtube). Also, get blood tests to rule out anemia, h-pylori, get an MRI of head and neck. Have doc order ultrasound of abdomen to rule out abnormalities causing chronic pain. Autistics don’t normally self abuse unless there is an underlying or possibly many underlying medical etiologies causing self abuse. Rule out. rule out. It will bring you closer to finding out what keeps the self abuse going and what can bring it on. Many blessings to you what a great family you are. Things will get better. Hang in there. Use the time your son is in out of home placement to regroup and heal in your own minds. This will set you up to have more peace and relaxation to find help for your son. Doctors are baffled by this behavior because it’s complicated. It is never one thing that causes self abuse. It’s many things. The more things you can eliminate that cause or trigger the self abuse, the closer you will get to hope and healing. Don’t give up. It takes a long time, but your beautiful son depends on you. You are his greatest advocates. Be strong. You are not alone. Others are praying and rooting for you and your son and other kids. Blessings.
My daughter also self-injures – hit herself over 1000 times an hour – is 9 years old and has autism. The picture of your son brought me to tears. What a wretched thing for a child to endure. I share your pain and despair. We are about to try medical marijuana to treat our girl’s chronic SIB, as well as the permanent side effects from anti-psychotic medication (Ridperdal, Seroquel) that include dykinesia, agitation, tics, akathisia, restlessness, anxiety, etc. I am following the story and work of Mieko Hester-Perez and her son Joey’s successful MM treatment. If you haven’t yet heard of her, please check out this story then visit her website or contact her…she may be able to guide you.
http://www.420magazine.com/forums/420-magazine-articles/148545-medical-cannabis-autism-story-mieko-joey-perez.html
By the way, the only thing that has helped my daughter reduce her SIB (down to 500 a DAY, not 1000/ hour) and restore her to a somewhat normal existence was yet another anti-psychotic drug called Clozaril. We were forced on it by the hospital psychiatrist where she was an in-patient. I was surprised to read it helps with the symptoms caused by other atypical anti-psychotic meds…and it really worked for her. Much less hitting,muscle spasms, tics, anxiety. She now sleeps 11 hours a night and plays again after 2 years. I am not a fan of the toxic drugs given our children, but this is one med that actually help soothe the damage from the other meds.
I truly hope you find some relief for your son through medical marijuana. Mieko’s interview discusses the strains she recommends, and where to buy them…can you grow marijuana in Oregon?
Blessings for healing to your family
Thanks for the information, it definitely sounds like you have the same problems to deal with. Unfortunately, Alex’s situation makes Clozaril an unlikely candidate – he won’t tolerate blood draws without sedation, and it looks like you need regular blood draws for that one. Additionally, his seizure disorder would likely be a problem because it can cause seizures even in people not already predisposed.
I really hope the medical marijuana works out for you. I think it could really have worked for Alex if we’d had a while to figure out the right dosing or strain or something, and been able to get a consistent dose in him daily for a few weeks. If you don’t know much about marijuana, find somebody who does or do a LOT of reading. Make sure you have a solid supply – I know nothing of the laws where you are. Getting a grower in Oregon is a huge pain and until you have one, you really aren’t able to do anything. There are no dispensaries here, so if you can’t get a grower you’re completely stuck.
We were so terribly out of our element that we had no real chance of figuring out what Alex really needed. Make sure you really know what you need before going down that path so you don’t run into wall after wall once it’s already a crisis situation.
There has been some recent progress in a coconut oil extraction process that you may be interested in. Check the website and also check out my content namely “Uncle Bill’s No Nonsense Pain Relief and Mystical Cure All”
Cannibis oil has been used effectively for millenia for many human disorders. I am not a doctor. I am not a member of any organized religion. I believe in the most ancient spiritual belief system, often called Tao. I believe that the old “religions” were based on this system, including the beliefs and teachings of such people as John the Baptist and his cousin Joshua (now known as Jesus). They would anoint (christos) the sick with oil of kanehbosm (cannibis) and some miracles were the result.
Search the old testament for Exodus 30:22-33. I am told that Moses was “instructed” to annoint his followers with this oil, mixed with some other substances. Search archeological records for evidence of uncovered amphora in the middle east with residues of these substances. Search for current sources and case studies of the use of cannibis oil as a medicating ointment.
I began using cannabis as a recreational drug when I was nineteen. I got great grades in college and did well in my professional career. I smoked it secretly almost every day for nearly forty years. I used less and less per “dose” even in the earliest days. I have never had a bad reaction to it. I don’t like the higher levels of active ingredient (thc) but prefer the more common. I now regard it as a sacrement. I haven’t had access to the plant for several years as law enforcement dangers encroach. I have grown very small amounts in some of my homes. May the Way be with you.
If we can help in any way- please contact us! I have two autistic boys, and I truely feel for you. If you are in Colorado- let’s get together!!! Janet (303)719-8658
I saw some of the news clips and read your posts on Alex. It must be very difficult to watch your child injure himself so severely. It’s clear you love him dearly and just want to find a way to improve things for him.
I was wondering if Alex has had a sensory assessment from an occupational therapist to see if some regular sensory input may impact on his SIB?
Actually, yes, we took Alex to a private OT for a while, and we had a “sensory room” built in the garage for Alex when he was still living with us. It helped a ton at first, but then … I dunno, it’s like he got used to it or something. Slowly but surely his mood got worse and worse, and we had to give him up.
Thanks for your support, it does mean a lot to us!
I was ready your story and was like OMG that is my youngest son who is 9…. We have basically tried every med out there with NO benefits…. Nothing seems to work on him. He only sleeps 4 hours a night and has been this way since birth…. UGH… and I have 3 other boys all on the spectrum, but thankfully they are higher functioning than he is. I have been feeling so lost and thinking that I too am going to have to put him in a group home because we can no longer control him and he is getting so big and strong and not only hurting himself but us and his PCA’s and kids and staff at school. It breaks my heart….. I have always been against Marijuana ever since my first failed marriage to a alcoholic pot head. I guess it just left bad memories or thoughts about it… Not to mention in my state (MN) it is illegal … But now that I have a son like Nick with NO help being offered that works from the medical community I am thinking this may be the way to go.. Just wondering how to even get started….. Really need Help…. I don’t want to give up on him just yet… Breaks my heart
For those that have kids on the spectrum – kids that only sleep 4 hours a day – try over the counter medicine called Melatonin.
It worked for my son. He started sleeping normally. One piece of the puzzle!
Shawn
Hi, I leave in London and I recentely did a bone marrow transplante because of a multiple myeloma a kind of cancer on the bone that there is no cure. I read about Cannabis oil and I need someone help how to get it. I can’t to prepare for myself because I could’nt find a plant and here in London is ilegal. I need phone number and adress to go and buy it or go in USA. SOMEONE HELP ME PLEASE my email anjosmarg@hotmail.co.uk
I can’t help you directly, but I’m certain there are others in London in similar situations. I have no idea how you’d find the right people, but I’d suggest starting with people you trust. It surprised me when I started talking about Alex just how many people I knew who had access to at least small amounts of cannabis.
Thanks for sharing! I am glad that at least there is a hope for us who have an autism member in our family. I also have a little brother, he is 13th now. He couldnt speak or communicate with us by verbal, but he could understand us somehow. But he is always laughing without any reasons and super active too. Unfortunately we lives in Indonesia, which is illegal to own marijuana or even there is no medical marijuana yet in here. I really want to apply him medical marijuana as well but still didnt know how to do that. I am planning to fly somewhere to Cambodia because i heard there is “legal” somehow over there or even Europe. I am planning to buy the seeds as well so i could plant it by my own. But how to give it as a plant to my brother anyway? Instead of brownies, do you also make a tea or anything else? Thanks for your attention anyway!
We tried raw hash, raw hash oil, and butter baked into foods. We never tried tea, because Alex didn’t even eat the brownies, which were sweet. It turned out to be easier to just use raw hash and oil rather than trying to put it into anything else.
I’d suggest looking at The pediatric cannabis facebook group – you have to ask the admin for an invite, but that group has a lot more information than I have, and can probably give you better advice for how to figure out medical uses of cannabis.
I feel for you. My son’s story is somewhat similar to yours. We have tried all the typical drugs and all have side effects. Nathan was institutionalize when he was 16 years old until he was 18. It was the hardest thing my husband I have ever had to do. Nathan is now almost 23 and in a group home closer to home. Nathan suffers from a chromosome deletion (2q37) along with autism, nonverbal, physical disabilities, developmental delays, OCD, severe anxiety….. On top of this he has severe self injurious behaviors. He went to the ER on Monday because he was gouging under his eye so bad that he was bleeding profusely and it wouldn’t stop. The group home had to throw away all of his bedding because of the blood. This is just one of several trips to the ER for SIB. I am so afraid he will gouge his eye(s) out or worse. He is now starting the drug naltrexone. It breaks my heart to see him suffer every day of his life. I am from Wisconsin and a form medical marijuana has been approved but only for a rare seizure disorder. There has to be something more for Nathan to help him live some kind of quality of life. Thanks,
I wish I could offer you some support. Cannabis seems to have the power to calm Alex down, but we never could figure out how to reproduce those perfect doses consistently. It didn’t work for us for a long time, but you could try reaching out to local media outlets with home video. The public is still largely unaware of just how intense self injury can be in this very unknown segment of the population. It sounds like your son’s is even more intense than Alex’s.
You could always try cannabis illegally, but that’s a huge risk, and potentially very easy for you to get caught given your son is in a group home.
I wish you the best. I wish I could offer you some useful advice.
God bless your family for trying so hard to help your precious child. I can’t imagine the pain, the hopelessness and frustration you must feel on a daily basis. What is most disturbing to me is that we have all these charity groups, all these protection and advocacy groups, and all these state, federal and county agencies that are supposed to be “helping” the disabled and yet we see, time and time again, they are doing NOTHING to help families such as yourselves. WHERE are the services and supports you child needs so he can remain at home? What is the point of all these state WAIVERS that receive federal funding to “help” the developmentally disabled? Obviously, this is a major scam that the media has yet to investigate. WHY is it that so many families with severely disabled children, children that are clobbering themselves daily, who are suffering with medical issues, are NOT getting the services and supports they need, yet each state is getting federal funding for “waivers” to help these very people? WHERE is the money going? WHO is in charge of monitoring these waivers? How is the money being spent? Nobody seems to know…..and meanwhile, so many families are suffering…..