Oregon Medical Marijuana Program
Autism and The Associated Press
The social factors of satisfactory treatment are even more important than the financial. Autism patients are frequently social pariahs whether they want to be or not.
Dr. Phil Leveque Salem-News.com
(MOLALLA, Ore.) - The Oregonian, May 10, 2009, had another AP article this one by Lindsey Tanner about a “cure” for Autism.
For those who don’t know, Autism is a very mean disease and the layman or new parent would consider the child crazy because they certainly do compulsively weird things and apparently cannot communicate by speaking or paying ANY attention to parents or even highly skilled Autism specialists which are usually specially trained psychologists.
The article states that standard long-term behavioral therapy requires 30 to 40 hours of treatment per week for many years. I don’t know how much psychologists get paid for these 30 to 40 hours per week but I have a friend with two Autistic children and they racked up $75,000 in costs in one year. They went bankrupt.
I have written about this problem before, see Autism, Ritalin and Cannabis and Autism, ADD, ADHD and Marijuana Therapy here at Salem-News.com.
The standard medications are Ritalin, an amphetamine like drug, and several mixtures of amphetamines. Both of these kind of drugs can be dangerous and lethal with several hundred deaths with their use.
I have written that marijuana/cannabis doctors in California have found that these drugs in cookies have miraculously “normalized” Autistic, ADD and ADHD children.
I presume may parents, psychologists and psychiatrists shudder at the thought that marijuana, the “devils drug”, could possible be effective for these devastating diseases. They should remember that these patients exhibit a very high level of excitement.
This being so how come Ritalin and amphetamines, both of which are powerful brain stimulants or excitants, should be effective for an obviously highly excited child.
We know that marijuana is effective for Parkinsonism, Epilepsy and certain other brain exciting diseases. We also know that only about one of ten Autism patients recover to normalcy and these recoveries are after years of the dangerous Ritalin and amphetamines and/or highly expensive one on one psychologic behavioral therapy.
With even the relative few marijuana for Autism successes it seems logical to me that somebody someplace should pay attention and give MJ a clinical trial. One factor to remember is that MJ is one of the safest medical agents ever discovered with never a death.
The financial aspects of MJ treatment seem obvious and I am not talking about the highly expensive Marinol, the synthetic marijuana medicine, which frequently causes panic attacks which is about the worst thing to occur with an Autism sufferer.
The social factors of satisfactory treatment are even more important than the financial. Autism patients are frequently social pariahs whether they want to be or not.
IT IS TIME FOR A CLINICAL TRIAL OF MARIJUANA BROWNIES FOR AUTISM.
Too much money and treatment has been spent on these cases. It’s time for progress.
Medical Marijuana: A Valuable Treatment for Autism?
I am certainly not an advocate for drugs-either legal or illicit. I have never smoked and I don’t care at all for alcohol. And I agree with Oliver Wendell Holmes when he said, “I firmly believe that if the whole materia medica could be sunk to the bottom of the sea it would all the better for mankind and all the worse for the fishes.”
Having said that:
In ARRI 16-2 we published a letter from a mother in Florida whose very large autistic son changed from a sweet, loving boy to a teenager who flew into unpredictable rages which “were usually associated with self injury, aggression and property damage.” She went on, “At times I had to lock myself in the bathroom; otherwise he would attack me. We gave him many medications, but nothing worked.”
A friend suggested a solution: a brownie with marijuana baked into it. “Soon after he ate the brownie,” she said, “my son’s anxiety disappeared, and his sweet, loving behavior returned. He shows no signs of being under the influence of a drug. He now receives one marijuana brownie and several doses of Marinol, which contains the active ingredient in marijuana, each day. This has clearly saved my child’s life and my family’s life.”
On page 7 of this issue of the ARRI you will find a letter from Ray Gallup, a well-known autism activist in New Jersey whose teenage son has become extremely assaultive, sending members of his family to the hospital and requiring police intervention on a number of occasions. Like Ray, thousands of parents are dealing with children who are so out-of-control, and so violent to themselves and others, that they can make their own lives and that of their families hellish.
In ARRI 16-1 we published an editorial on various means of dealing with such severely self-injurious and assaultive behavior, but marijuana use was not an approach that we mentioned. Many drugs are used to control these kinds of behaviors in autistic individuals, including risperidone (Risperdal), which has a large range of highly toxic effects (ARRI 16-4). It seems to me if one is going to need to use drugs, one ought to consider a relatively safe drug, like marijuana, if research bears out the good results that a number of parents have reported.
I use the term “relatively safe” because marijuana and Marinol, the prescription drug that contains the active marijuana ingredient tetrahydrocannabinol (THC), do cause adverse effects-but these effects, evidence suggests, are generally much less harmful than those caused by psychotropic drugs. Marijuana may cause subtle long-term memory and cognitive decrements, although evidence is equivocal (see related article on page 4). The drug can cause cardiovascular problems including abnormally high or low blood pressure, fainting, or abnormal heartbeat, can exacerbate depression or other mental changes in vulnerable individuals, and can cause nausea, vomiting, weakness, or sedation. The word is still out as to whether orally ingested marijuana is carcinogenic (although there is some evidence suggesting that it is anti-carcinogenic), and there is some concern that it can precipitate schizophrenic symptoms in some individuals. Also, the drug can cause dependency and possibly birth defects.
Clearly, medical marijuana is not a drug to be administered lightly. But compare its side effects to the known effects of Risperdal, which include massive weight gain, a dramatically increased risk of diabetes, and an elevated risk of deadly heart problems, as well as a host of other major and minor problems. Other psychotropic drugs are no safer, causing symptoms ranging from debilitating tardive dyskinesia to life-threatening malignant hyperthermia or sudden cardiac arrest. Of all drugs, the psychotropic drugs are among the least useful and most dangerous, and the benefit/risk profile of medical marijuana seems fairly benign in comparison.
Moreover, the reports we are seeing from parents indicate that medical marijuana often works when no other treatments, drug or non-drug, have helped. Among the comments received by a parent soliciting feedback from other parents who are using this treatment for autistic individuals:
* “I know it’s not the end-all answer, but it’s been the best answer for the longest time for us in [comparison] to ALL the other medications. I cannot tell you how many months we would go on a medication wondering if it was doing anything, anything at all. Here we can see the difference in 30 to 60 minutes.”
* “My son (who is almost nine years old) has been on medications to address his severe autistic behaviors.... None of the medications has ever made a difference, except for making his behaviors worse.... A few months ago we tried the prescription drug Marinol and noticed a drop in the severe episodes, no fits and little to no aggression toward his teacher and family members on a daily basis. A few weeks ago we started him on cannabis and stopped the Marinol. He has been in a much better mood and is much easier to keep on task in the classroom now.... He still has days when he gets angry and moody, but we can adjust the dose to help him through those days.... I feel much more comfortable administering cannabis than something like Risperdal.”
According to information ARRI has received, medical marijuana is not legal in many states. Information on whether or not medical marijuana can be legally prescribed in your state is available on the Internet, at www.mpp.org. Additional information can be found at www.maps.org/mmj, www.NORML.org, and www.druglibrary.org
It is important to keep in mind the distinction between legalizing marijuana for medical uses, which has been done in some states, and “recreational” drug use which is illegal throughout the U.S. Judging from the evidence in hand, I believe legalization of medical use is justified. Legalizing marijuana for non-medical use (as has been done for alcohol) is quite another issue.
Even if medical marijuana can be legally prescribed in your state, doctors are likely to be very reluctant to help you obtain the drug. You may be able to obtain information or help from local AIDS awareness and advocacy groups, which have been in the forefront of making medical marijuana available to the public.
If you decide to try this approach, the Autism Research Institute would very much like to learn about the results-positive or negative. We are also interested in hearing from physicians with expert knowledge about the benefits and adverse effects of either short-term or long-term use of medical marijuana.
Again, I stress that I am strongly opposed to drugs in general, and consider them a last resort to be employed only when safer and more efficacious treatments fail. But while I am not “pro-drug,” I am very much “pro-safe and effective treatment,” especially in cases where an autistic individual’s behaviors are dangerous or destructive. Early evidence suggests that in such cases, medical marijuana may be a beneficial treatment, as well as being less harmful than the drugs that doctors routinely prescribe.
Autism, ADD, ADHD and Marijuana Therapy
Dr. Phil Leveque Salem-News.com
Phillip Leveque has spent his life as a Combat Infantryman, Physician, Toxicologist and Pharmacologist. He is an expert in medical marijuana treatment.
(MOLALLA, Ore.) - It has been known for at least 2,000 years that Marijuana/Cannabis is a psychotropic that affects the brain and central nervous system. (The Scythians) The first western references seem to be that it was a euphoric, in other words a central nervous system stimulant not like cocaine or amphetamines but a gentler pleasant stimulant.
Dr. W.B. O'Shaunessy (see: Medical Marijuana Feb-21-2008) found it to be an anti-convulsant against Tetanus, which may seem to cloud the issue. It is also a good anti-epileptic and centrally acting analgesic even effective for migraines as well as an anti-depressant and anxiolytic.
Dr. Tod Mikuriya has written that it promotes homeostasis or normalization of function in many various systems of the body and also modulates or moderates emotional hyperactivity such as Post Traumatic Stress Disorder, often known simply as PTSD.
I had heard or read about California marijuana doctors reporting that it was effective for the treatment of ADD and autism. These were single or isolated reports because physicians seemed to be reluctant to even talk about what the U.S. government constantly bleats about a "dangerous addicting drug", marijuana.
Dr. Mikuriya reported in 2006 in O'Shaunessy marijuana magazine that a 15-year old child was brought to him by his mother. He had been diagnosed with ADD and psychoses and had been given over 30 different kinds of drugs including pulverized kitchen sink, most of which made him combative and worse. He had used marijuana at age 11 with older friends.
It had a calming effect but his use brought police action and three court ordered rehabs which really drove him crazy. His mother found Dr. Mikuriya who prescribed Marinol which worked. A judge would not let him use ut, but a second judge did allow it and he got a marijuana permit and smoked it with dramatic improved results.
I decided a search of the Internet was advisable and I typed up marijuana autism with the surprising finding that the Autism Research Institute posted an article by Bernard Rinland Ph.D. Medical Marijuana: a valuable treatment for autism in 2003. The site discussed a letter from a mother of a violently autistic child. A friend suggested a marijuana brownie cookie which in the words of the mother "saved my child's life and my family's life."
The article continues to state that many parents in the same situation have reported marked success.
A second article from the American Alliance for Medical Cannabis (AAMC) in 2002 written by Jay R. Cavanaugh Ph.D. titled Medical Cannabis and Brain Disorders reported effective use as follows: Bipolar disease (81 patients or 20%)
ADHD/ADD (53 patients or 13%)
Multiple Sclerosis (32 patients or 8%)
and neuropathy (35 patients or 9%).
Other interesting findings were PTSD (30 patients at 7%) and obsessive compulsive disorder (2.4 or 6%). They also reported successful treatment of Tourettes, Parkinson's, and Autism (10 patients or 2%)
It is time we got our medical dinosaurs M.D.S. out of the closet and educated to the marvelous benefits of this safe effective NEW-OLD medicine.
Got a question or comment for Dr. Leveque?
Email him: Newsroom@Salem-News.com
source: May-23-2008 07:56
Autism Ritalin and Cannabis
Dr. Phil Leveque Salem-News.com
Phillip Leveque has spent his life as a Combat Infantryman, Physician, Toxicologist and Pharmacologist. He is an expert in medical marijuana treatment.
(MOLALLA, Ore.) - I wrote a recent article: Autism, ADD, ADHD and Marijuana Therapy, in which I reported that California Medical Marijuana doctors had reported successful treatment of such children with marijuana cookies and even by smoking marijuana cigarettes.
I received by email a mixed bag of responses from both extreme ends of the spectrum. One irate response even suggests I was a quack for recommending it.
I would like to reassure my readers that under Oregon law, to which I had to adhere, I neither recommended, approved nor prescribed marijuana despite what the New York Times printed.
The patients (99%) were using and wished to become legal. Oregon law requires a specific diagnosis of certain medical conditions, most of which such as epilepsy, require a specialist's diagnosis.
If that physician does not wish to sign the patient's application form for religious, moral, ignorance, fear of DEA or other reasons, the patient must find a physician willing to sign the application based explicitly on the specialist's diagnosis. I was one of those 2,699 physicians and I signed for about 5,000 patients.
All my applications were approved. I don't think any of us 2,600 doctors consider ourselves "quacks", progressives probably. At any rate, we have signed for 20 thousand patients.
Now getting to Ritalin which has been prescribed for these children since about 1970. I remember it and I said, "why would a brain stimulant be prescribed for a hyperactive child- well it worked! Amphetamine (Dexedrine) had been used before but that was grabbing a "tiger by the tail."
Ritalin was considered a junior grade stimulant compound to amphetamine and worked adequately for these children.
Medicine takers discovered and still consider that if one pill is good, two should be better and three or more better yet. Then there comes the tiger. RITALIN HAS CAUSED ABOUT 300 DEATHS FROM OVERDOSE.
The use of cannabis/marijuana, medical or for kicks, has never killed anyone and if anyone knows different I will gladly pay you $5.
Many parents have written in that marijuana cookies work great for Autism, ADD and ADHD and I am only the messenger By and large, the prescription drugs are minimally effective, have BAD side effects or may be deadly. Marijuana/cannabis will be the new drug for these children. Wanna bet?
Sam’s Story: Using Medical Cannabis to Treat Autism Spectrum Disorder
Background on Sam
Sam is an eight-year-old male. He was diagnosed with Pervasive Developmental Delay- Not Otherwise Specified (PDD-NOS) when he was two and one-half years old by a pediatric psychiatrist at the M.I.N.D. Institute, UC Davis Medical Center. He was re-diagnosed at the M.I.N.D. Institute in October of 2007 with Autism Spectrum Disorder (ASD). As the psychiatrist told Sam’s mom and I, “Sam is a poster child for ASD”. Sam has lowered cognitive abilities and lowered verbal skills. Sam lives with his mom, dad and his younger sister who is six years of age. She is a typical child with no physical or mental health issues.
Sam was adopted at birth. He had no prenatal issues and was a healthy infant. At around 18 months of age he began exhibiting ASD like behaviors and after six months of reassurances by his primary doctors that he was fine Sam was diagnosed with ASD. Since his diagnoses he has received special education services, speech therapy, occupational therapy, and behavioral therapy. He had been on the Gluten-Casein Free Diet (GCFD). He has been treated by a doctor (supposedly one of the best in the country) who treats ASD patients following the Defeat Autism Now (DAN) protocol which emphasizes a “BioMedical” approach established by Dr. Rimland the founder of Autism Society of America and the Autism Research Institute in San Diego, CA.
As a family we have spent tens of thousands of dollars trying to help Sam. Even though as a teacher I have full coverage insurance, many of the services and doctors Sam has seen are not covered under my plan. Blue Cross of California still categorizes ASD as a “mental illness” instead of an “organic disorder” which precludes it from receiving the coverage a typical physical illness would be granted. I only mention this because since Sam was diagnosed with ASD we have devoted ourselves to helping him. This devotion has been in the forms of time, effort, education, therapy cost, medical costs, conferences, parent support groups, and most importantly love.
Sam loves people and he loves to “be on the go”. He has been to Disneyland four times, been camping many times, and has been to San Diego to visit the zoo, Wild Animal Park and Sea World. Sam loves to go to San Francisco Giant and Sacramento Kings games and loves to travel to San Francisco. Sam is our gift from God and we love him just as he is. Many tears have been shed from worry and from the joy of watching Sam achieve things parents of typical children take for granted. There have many moments of laughter and warmth given to us by our quirky, sweet, lovable, little boy.
Purpose of this Journal
I write this journal for Sam and other children like him. We almost lost our little boy to ASD and pharmaceuticals. By the grace of God and the help of a little Medical Cannabis (MC) we have him back. Maybe this journal can give other parents hope when all else seems dark and hopeless. Maybe this journal can prompt others to tell their stories if they have treated their ASD child with Medical Cannabis (MC). Even more important would be some legitimate scientific studies conducted to determine the effectiveness of MC to treat symptoms of Autism.
I never wanted to be an advocate for Medical Cannabis (MC). I do not drink alcohol, take marijuana, or any other psychoactive drug. However, this experience has been so profound and dramatic that I feel no choice but to speak out on the issue. I understand the political and legal sensitivity of giving an eight-year-old child medical cannabis but if one child and family can be helped from my disclosure any risk to myself is acceptable. As a parent, I only want to help my son. No one ever questioned our decision to give our son the potpourri of pharmaceuticals prescribed by his doctors that, in my opinion, almost destroyed him.
My wife and I both have very conservative parents and families who are very much opposed to any type of “illegal” drug use. We have their complete support. They witnessed Sam’s deterioration over the last year and they saw his almost miraculous turn around once we started using the MC. We have only disclosed treating Sam with MC to our closest family. We have shared the information with Sam’s primary pediatrician on the recommendation of Sam’s MC Doctor. The pediatrician has been supportive in an “off the record” manner. He has been Sam’s pediatrician since birth and he knows that we are responsible parents.
Sam’s Educational Background
Sam has had significant difficulty in school. He did well in preschool but began having constant problems once he entered Kindergarten. After a few months in a Kindergarten Special Day Class (SDC) Sam was removed from his neighborhood school and placed in a more specialized program for children with ASD. In 1st grade he was removed from that program and placed in a very restrictive setting that deals only with ASD kids (also public school). The population of that program was much lower than Sam, i.e., he was the only verbal child out of 12. Throughout this time Sam continued to have severe behavioral problems. To begin the 2007-08 school year he was placed back at his home school. His negative acting out became so intense and frequent that he was only able to attend school for 3 hours each day and was getting sent home at least 2 days each week. He was extremely unhappy at school and this unhappiness seemed to compound the increasing difficulty he was having at home.
In December of 2007 Sam was placed in a Non Public School setting due to his aggressive, destructive, unsafe and antisocial behaviors. Data from a Functional Analysis Assessment done over a month period of time by a Behavioral Intervention Specialists (BIP) showed that Sam was having anywhere from 10-20 hitting, pushing, knocking things over, running off incidents per each 3 hour day. In summary, school was a disaster. Sam wasn’t learning anything and the teacher and his one-on-one aide were just trying to prevent him from hurting himself, them, or other children.
Medical Intervention with Pharmaceuticals
Throughout this time we were encouraged by school personnel and his doctors to keep trying different medications until we found one that would help him. We were told that this could be a long process because kids with ASD were extremely sensitive to medications in general and that there was no one drug that worked for every kid. We were constantly reminded of the success stories of other children. Unfortunately, taking any of the medications prescribed by his doctors never helped Sam.
On the contrary, Sam’s mom and I were seeing a dramatic escalation of his anti social behaviors at school and at home. We had never had such intense problems at home. Sam’s condition imminently threatened the safety of our six-year-old daughter whom he began hitting on a regular basis. There were times when I would have to physically restrain Sam because he was in such a rage. He would go around the house yelling and knocking things over as if he were going crazy. He would try to run out of the house at 10 PM in the rain with no shoes on. Our home became a lock down facility. We were all miserable and Sam just kept getting worse. The future looked bleak.
All this time we were going through a litany of medications to "help" him. Over a two-year period we did trials with Respirdol and Abilify (atypical antipsychotics), Ritalin and Adderall (amphetamines), Prosac, Paxil and Celexa (serotonin reuptake meds), and Tenex (Guanfacine), which is a blood pressure medication. We have a cupboard full of prescriptions for Sam. We tried different versions of the same type medications. We were encouraged to keep trying a medication until we knew for sure it worked or didn't work. The problem was he was having significant negative reactions to each medication he would try. He gained 10 pounds in 6 weeks on the Respirdol. Some of the meds, like the amphetamines, were obviously ineffective but others like the Abilify, Resperdal, and Paxil took time to develop negative side effects. The last medicine we tried was the Celexa. He was on it for 2 days in December and had a severe negative reaction. To put it bluntly, he "flipped out" on the medication. We stopped giving it to him immediately but the negative effects lingered with Sam for weeks. At that point we took Sam off all medication. His doctors recommended we try Depakote next. At this point, we were fearful that we would be able to manage him at home either with or without medication.
Decision to Use Medical Cannabis
At this point it was clear that the medications being prescribed by his doctors were not only failing to help Sam but they were harming him. He had gained significant weight, had an increase of aggressive and unpredictable behaviors and, most alarmingly to us, became very distant to those he had always loved so much. He began hitting his grandmothers and sister, and did not engage with his parents as he once did. He even became distant to me, his dad, the one person whom he had always had the most attachment. It was heartbreaking to watch him slip away. It was like the Sammy we had known was disappearing and we feared that he would steadily slip into greater isolation. There were several episodes that were so bad that we considered taking him to the hospital.
My wife came to me with the suggestion that we consider treating Sam with Medical Cannabis. She had found information on the Internet that documented another parent’s success in treating her son who had similar characteristics to Sam with Medical Cannabis. I researched the subject myself and found an article written by Dr. Bernard Rimland from the Autism Research Institute that authenticated the parent’s story and stated the he would be more in favor of trying MC before he would more “toxic” pharmaceuticals. The article can be found at the following address (http://www.autism.org/marijuana.html).
After discussing it with my wife and Sam’s grandparents, we decided to pursue it further. I knew very little about getting a recommendation from a doctor but was able to contact a doctor in my local area who recommends MC to patients. We had no idea how to obtain marijuana and we didn’t want to do anything illegal. We made an appointment with the MC doctor and gathered up all Sam’s medical and school records The doctor reviewed the case, examined Sam, and educated us on Medical Cannabis. He also made it clear that we would need to share information with Sam’s primary pediatrician. Additionally, we discussed the sensitivity of the issue and the risk that we were taking. As a team, we decided to maintain a “need to know policy” regarding Sam’s new medication. It was decided that school personnel did not need to know. Sam’s mom and I learned that in California a physician can “recommend” MC. It is not called a prescription but a recommendation. We also discovered that we would be able to obtain the MC locally through a Cooperative.
Using Medical Cannabis to Treat Sam
I have been keeping a journal since the trial began. The entries were daily to begin. After the first three weeks I reported every three to four days. I am not including every journal entry in this paper because it would be too long.
January 8th, 2008
Today was the first day we gave Sam MC. We obtained the medicine around 3:00 PM. Because Sam is such a finicky eater we were very concerned about putting the medicine in baked goods. We wanted to give him the same amount of medicine at the same times each day and we knew that the baked goods could be problematic. Sam doesn’t like to eat breakfast before school and has an almost uncanny ability to detect anything that we place in his food. Often, he smells food before eating. Due to these considerations, we decided to give him the MC orally, in the form of Hashish.
At 4:00 PM we administered his first dose. We gave him an amount that was about the size of a BB. We rolled the dose into a tight ball and buried it in a spoonful of yogurt. We told him he was taking a new medicine. He chewed the MC when he discovered it in the yogurt. He complained of the taste. We wanted to start out with a very small dose.
Sam had been having another horrible day before the dose. After 30 minutes we could see the MC was beginning to have an effect. Sam’s eyes got a little red and got a bit droopy. His behavior became relaxed and far less anxious than he had been at the time we gave him the MC. He started laughing for the first time in weeks. My wife and I were astonished with the effect. It was as if all the anxiety, rage and hostility that had been haunting him melted away. That afternoon and evening his behavior was steady and calm. He started talking to us and interacting with us again. Sam’s was physically more relaxed and began initiating physical contact with the motivation being affection instead of aggression. It was amazing! He went to sleep that night with no problem and slept through the night.
January 9th, 2008
Gave Sam about ½ dose (1/2 BB) of MC at 7:00 AM. He was not attending his new school yet so spent the day with Grandparent while we were at work. He had rough morning. Hitting, yelling, non-compliance, trying to jump in their freezing cold pool, and running out the front door.
Re-dosed Sam at 3:30 PM when I got home from work. I gave him a BB sized dose, as I had the previous day. I feared that our experience was an anomaly and that, like all the other meds, it was just false hope.
After 30 minute of giving Sam the dose his behavior deescalated to the levels it was the previous night. He was calm, happy, affectionate, more verbal, more compliant, and much more predictable. I noticed that he was open to conversation and even receptive to some short reading instruction. His reduced anxiety level made his behavior manageable and even agreeable. He was perseverating about certain things far less and we were able to redirect him far more quickly and effectively when he did get upset or need correction.
January 10th, 2008
Gave him BB sized dose at 7:00 AM. He was staying with his Grandparents again for the day because he was not in school and we had to work. Before 8:00 AM he had a few episodes of acting out. He was becoming agitating and anxious and then around 8:20 my mom noticed that the MC was beginning to take effect. She described it to me as follows. “It was like a wave of calmness just swept over him and he changed from being a monster into a loveable, little boy”.
When I got home from work he was still doing great. I didn’t give him an afternoon dose and he was fine for the rest of the day. Slept fine that night.
January 11th, 2008
BB sized dose at 7:00 AM. Spent day with his mom. Had one blow out on walk when he wanted to jump in a small creek. No PM dose was necessary. Improved cooperative play with his sister. His sister came to me in disbelief when Sam was playing with her. She said’ “Sam is acting like a regular brother today”. When she told me that I just cried because here was this little girl who had lived in such fear, for so long, finally getting a brother she could love. Sam laughed and played. Again, the results we were getting far exceeded anything we could have imagined.
January 12th, 2008
¾ BB sized dose at 8:00 AM. It is a Saturday. Did Ok up to 2:00 PM and started to get agitated and anxious for an hour or so. Re-dosed him at 3:00 PM with ¾ size BB and within 1 hour he has calm again. That afternoon around 4:00 PM he lay down on our bed and took a nap. He rarely naps but fell asleep for an hour. Woke up happy and had a good evening.
January 13th, 2008
8:00 AM dose; 1 BB size; Sunday; plans to go to Boat and RV show. Sam did great at the boat show. No running off, easily redirected, no yelling, and happy. It’s like he is a bit elevated and tipsy. He does look a bit “high” to us but it would never be noticeable to anyone else. His speech is clear (no slurring) and his gross or fine motor coordination are normal. In fact, his speech is moderately improved on the medication (both expressively and receptively). His anxiety level is greatly reduced and it just seems that he can concentrate better for longer stretches of time. This may contribute to the improved language skills we are noticing. If I scaled his anxiety from 1-10, (10 being extreme anxiety and 1 being no anxiety at all) I would place him at a 3 for today. Prior to the MC trial that began Jan. 8th, I would have placed him at a 10. No aggressive behaviors. No hitting, kicking, or threatening to do so. Sam is displaying much greater affection and is more compliant and social. He still has deficits in these social areas but far less pronounced than before the MC trial.
January 18th, 2008
The following dosage is what we give Sam. The form of MC is hashish.
¾ BB size dose of MC at 7:00 AM
¾ BB size dose of MC at 3:00-4:00 PM (if necessary)
The MC continues to be a very effective medication. Sam aggression has decrease dramatically. Prior to the medication trial, Sam was averaging 4-5 major outbursts per hour at home and an even greater frequency at school (see Functional Analysis Data Summary). An outburst could last minutes or hours. The behaviors included hitting, threatening to hit, kicking, throwing things, knocking things over, destroying property, yelling, crying, running off, and doing other unsafe acts like climbing over fences and leaving the house without supervision at night. Once Sam got into an agitated state it was extremely difficult to redirect him or get him to “move on” to something more positive.
I really like the flexibility we have with the MC. There have been afternoons where a dose hasn’t been necessary. We don’t want to give him any medication unless we see symptoms that justify it. The AM dose is consistent because he is going to school but the PM dose can be eliminated. We have been giving him the PM dose 4 out of 5 days on average. Another convenience of the MC is that we can adjust his dose slightly depending on certain variables. If we something special planned, we can adjust the dose. For example, last night our daughter was given a Student of the Month award. There was a ceremony at the school board meeting that lasted 45 minutes or so. Sam was able attend and sit throughout the ceremony without incident. He was able to enjoy it and obviously, for us as parents, it was great that we were both able to be there for our daughter. This is in complete contrast to what usually happened to us when we had to take Sam somewhere like this. Before Christmas and prior to him being on MC, our daughter performed in a school musical. Within 10 minutes, I had to leave with Sam because he would not sit down and he began yelling when we tried to get him to stay and watch. This incident pretty much illustrates what life was like for us before this medication. I am not saying that this wouldn’t happen again but now we feel we have a chance for Sam to be successful in situations where we had little hope before.
January 20th, 2008
Since the MC trial began, Sam has not had one act of hitting, kicking or threatening to hit. This includes school and home. SAM HASN’T GONE THIS LONG WITHOUT AGGRESSIVE BEHAVIORS IN YEARS. Additionally, the following improvements have occurred. I have classified these behavioral improvements into the three categories; Reduced Behaviors, Significant Improvements, and Mild Improvements.
Reduced mood swings
Reduced crying for no reason
Reduced negative self talk
Reduced obsessive/compulsive behavior
Reduced non compliance
Reduced running off and escape behaviors
Improved attitude and happier. Shares happiness with others appropriately. (Before the MC trial, the only time Sam laughed was when others were angry, crying or hurt)
Increased flexibility to changes in routine or plans
Quicker transition from being upset to being OK
Improved affection to others
Improved concentration and on task behavior at school
Improved physical well-being. Far less complaining of stomachaches (probably because of being off other prescriptions) and more typical diet (the pharmaceuticals either made him habitually starving (Respirdol and Abilify) not hungry at all (Adderall, Ritalin) or caused him to have stomach irritation (Paxil, and Celexa). As I’ve stated, we feel much better about giving Sam MC that we did giving him the pharmaceuticals.
Improved language (receptive and expressive)
Reduced self stimulation with finger play and fingers to mouth
Increased ability to learn new information
Improved sociability with peers
February 21st, 2008
Sam continues to do great! He is getting great reports from school. His teachers write daily in a school journal. There has not been one negative entry and they are considering placing him in a more typical setting. Here are a few entries.
“Sam had another great day. He is such a joy to be around. His all day smiles and giggles are contagious.”
“John and I are so proud of Sam. He had a great day! He earned a trip to the barn this afternoon.”
“Sam did great! Today was the “Safety Fair”. Sam was awesome. He participated at each booth.”
“Another great day. We are currently working with Judith to develop a reading program that meets his needs. He always seems so excited to do his work and does great transitioning”.
Sam did great today! He was so awesome at the talent show. We won 3rd place!”
Removing the Medical Cannabis
After discussing the matter with Sam’s MC doctor, we decided to not give Sam any Medical Cannabis before school for a week or so to see if some of the negative behaviors returned. I concluded there were three main variables that could have accounted for Sam’s major improvement. One was the medical cannabis, two was his new school, and three was that he was no longer on any kind of prescription pharmaceuticals. On February 28th and February 29th (Thursday and Friday) Sam went to his new school for the first time without MC.
On both days Sam had acting out behavior that his teachers had not previously seen. He didn’t hit but he did knock things over in his classroom and did a lot of negative self-talk. The staff was able to get him turned around pretty quickly but they were concerned that he was acting out at all. They had not seen any of this behavior since he started there.
Sam's life has improved dramatically since he began using medical cannabis to treat his Autism Spectrum Disorder. Because Sam is doing better, we are all doing better. We have our life's back again. We still have an autistic son who faces many challenges but our lives have improved immeasurably. We can take Sam out to dinner, go shopping, visit friends, plan vacations, take him to visit his Grandparents, laugh as a family, and not be constantly worried that he is going to hurt our daughter or himself. In other words, we can live without being consumed by Sam's autism. Most importantly, SAM IS HAPPIER AND HEALTHIER.
We are going to continue to treat our son with Medical Cannabis. No one ever questioned us when we gave Sam all the other medications that never helped him, and in my opinion, caused him to harm. Medical Cannabis is natural and non-toxic. The only side effects we have observed so far are glassy and reddened eyes and an occasionally a slight drowsiness. When he wakes each morning up he is alert and happy. He has not built up a tolerance to the medication. We skip doses whenever we can. With the other prescriptions we were instructed to never miss a dose or it could disrupt the medication’s effectiveness.
Medical Cannabis may not help every child with ASD like it is helping Sam but I think it should be an options for parents when considering medication. Controlled studies measuring the effectiveness of MC in the treatment of children with ASD should be conducted. More user-friendly, reliable forms of MC need to be made available to patients (inhaler, pill, liquid forms). Unfortunately, other parents and who have treated their child with MC are afraid to disclose their experiences because of possible legal retribution.
Parents need the guidance and support of a physician before trying Medical Cannabis on their own. I recommend that there be a working relationship between the MC Doctor and the child's primary physician. The primary physician at least needs to know you are going to try MC. Our MC Doctor contacted our primary physician and without revealing the Sam's identity asked him how he would feel about treatment with MC. Our MC Doctor felt this was the professionally appropriate thing to do and I agree with him. Sam's school does not know he is treated with MC and we don't feel they need to know. We have been very selective in who we share information with.
It is difficult for parents of typical children to understand what it is like to be the parent of a child with ASD. I have worked with Special Needs Children for over 18 years as a Special education teacher in public schools (RSP and SDC). I have a Masters in Education with a Special Education emphasis. Yet with all this experience, I had no idea how consuming and life altering having an Autistic son would turn out to be. We know there are other parents out there who are facing the same challenges we face and like us, would do whatever they could to help their child. When I went to research this topic a story like this would have been useful. I hope Sam’s Story might be helpful and informative to other parents who are considering treating their child with MC.
This paper was written by Sam’s dad and completed on March 5, 2008
Oregon Medical Marijuana Program