Prohibition Makes it Tough on Parents
by Mary Lou Smart
Jeremy Patrone (not his real name) has a goal. He and his wife want their son Alex treated with cannabis.
They have done so in the past, with success. Since initial treatment, however, Alex has moved to a group home. Because of the hypocritical labeling of cannabis as a Schedule 1 drug with no known medical benefit under the Controlled Substances Act of 1970, the United States government protects its federal budgets at the expense of compassionate care.
The cruel policy of keeping cannabis medicine from the sick permeates every aspect of govern- ment, including housing that would receive any type of government assistance, even in states with legal medical marijuana programs.
Alex, 10, is severely autistic. He beats himself bloody on a regular basis. After his 5th birthday, his self-injurious behavior went from moderate to extreme. His parents tried to care for him, but his violent rages were uncon- trollable, which left them drained and barely able to work or care for their other child. Heartbroken, they put Alex in a facility contracted by the state for developmen- tally disabled children.
For more than a year, Jeremy has been describing Alex’s condition on his blog at www.alexneedshelp.com. He encourages parents as well as members of the media to contact him.
Autism is a catch-all label for a large family of complex developmental brain disorders known as Pervasive Developmental Disorders (PDDs). At six weeks of age, Alex was diagnosed with Tuberous Sclerosis, a rare, genetic disease that causes benign tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs and skin. Often affecting the central nervous system, the condition can result in seizures, developmental delay, and behavioral problems. Alex has seizures.
Autism occurs in a strikingly large number of children, one out of 110, more than pediatric AIDS, juvenile dia- betes and cancer combined. Its characteristics include severely impaired social interaction and communication. A disorder of neural development, its signature is often restricted and repetitive behavior. While nobody under- stands why the rate of new cases is growing by an esti- mated 10 to 17 percent a year, theories such as environ- mental factors and improved testing are given as possible causes for the increased incidence.
Dosing autism sufferers with anything is difficult. Having trouble with communication, they do not always follow instruction or let anyone know how they feel. Alex’s par- ents were frustrated because their son’s doctors pre- scribed a heavy regimen of pharmaceutical medications, including narcotics and seizure medications, that left him in a zombie state. His parents tried Zoloft, Risperdal, Ativan, Valium and many more, but Alex’s condition did not seem to be improving. They didn’t like seeing him drugged and wanted a more natural solution.
When friends told them about cannabis, they did look into it. Cannabis is known to help autism sufferers. While reports from the medical community concerning treatment of autism with cannabis are sparse in the United States thanks to the federal government’s Prohibition, online support groups and blogs written by parents document stories of children making significant improvement, and leading happier, healthier lives.
That cannabis helps PDDs is not surprising. There are many other conditions associated with brain trauma and anxiety, such as post-traumatic stress, where research documents the benefit of whole plant therapy.
Post-Traumatic Stress Success
Numerous studies point to the endocannabinoid system’s strong role in regulating emotions. Such studies, along with considerable patient testimony, convinced lawmak- ers to include Post-Traumatic Stress Disorder as the only psychiatric indication qualifying for a recommendation in New Mexico’s medical cannabis program.
Bryan Krumm, psychiatric nurse practitioner, with Sage NeuroScience in New Mexico, even petitioned the feder- al government in an effort to have cannabis moved from Schedule I to protect patients as well as medical profes- sionals.
“In terms of safety, there is nothing that we have to offer pharmaceutically that can match the safety of cannabis,” he said when contacted for an earlier article. “In my own practice as a clinician, I have never come across a single pharmaceutical agent that is as well tol- erated, and lacking in significant side effects, as cannabis.”
Many of Krumm’s patients suffer from post-traumatic stress, which, like autism, often involves high anxiety.
some very significant benefits in
helping with that, which go above and beyond what I’ve been able to do with just traditional pharmaceuticals,” he said. “Probably the vast majority of patients that I have in
the program still require pharmaceutical
treatment. But quite often the traditional
pharmaceuticals are not able to
manage the anxiety, not able to stop the nightmares,
the flashbacks, the constant, recurring thoughts that people get, and that’s where cannabis
is very helpful.”
Animal studies point to hyperactivation of the amyg- dala, the part of the brain involved in emotional regula- tion. Shown in research to perform a primary role in the processing and memory of emotional reactions, the amygdalae have a large number of cannabinoid recep- tors, as do other areas of the brain feeding into them.
“Activating those receptors helps turn off or slow down the hyperactivity,” Krumm said. “So we see things like a decrease in anxiety, a lessening of depression. With patients with chronic suicidal behavior, we’ve seen it take away suicidality when they would not remit with traditional pharmaceuticals. Another big thing, with PTSD we see mood swings with irritability and anger. Cannabis really helps to control that. It has the advan- tage of working very quickly when working with the inhaled route in being able to suppress those types of emotions and allow people to function better.”
Cannabis and Autism
With autism, parents are leading the way. Mainstream media outlets have covered the remarkable progress that Mieko Hester-Perez has had with her son Joey following cannabis treatment. Severely autistic, Joey’s condition had spiraled out of control. He too experienced violent rages. He weighed about 45 pounds and had been given less than six months to live when she decided to take matters into her own hands and treat him with cannabis. He lived.
“Autism is nothing more than brain trauma,” she rea- soned. “When you do research on brain trauma, and apply when you’ve learned, it’s easy to understand why cannabis is so effective with children diagnosed with autism. It’s miraculous.” After being interviewed by Diane Sawyer on ABC News Good Morning America show over a year ago, she received calls from parents around the world who want- ed to know more. Desperate to get their children off of drugs that didn’t do much more than knock them out, they wanted to be able to give them back their lives with a safer solution than strong drugs. After treating her son with cannabis for over two years, his physicians had told Mieko that the severity of Joey’s autism was no longer apparent. She decided that others needed to know.
Understanding their plight and the lack of resources available, she founded Unconventional Foundation for Autism, www.u4a.org.
“The cannabis community is unaware of all of the loopholes that we go through,” she said. “Parents cannot go public most of the time, because we are deal- ing with multiple government agencies, and need to do things discretely.”
In addition to being executive director
of Unconventional Foundation for Autism
(UFA), Mieko is a legal researcher. She is able to navigate through a web of federal and
medical information better than most,
and shares her information. Even so,
she’s well aware of the federal government’s determina- tion to stop compassionate care at all costs,
and does not speak in front
of a camera without an attorney at
her side. Considered a leading
resource for cannabis and
autism, UFA has
cannabis professionals on its board,
two doctors and two scientists.
“One thing that I learned right away,” she said in regards to cannabis therapy, “is that there aren’t any autism experts. The parents are the experts.”
Meiko says that every parent who comes to her wants to know about cannabis dosing.
“With pharmaceuticals you cannot find the right dose either,” she said. “At some point you have to dumb it all the way down into layman’s terms, because I have a lot of parents who contact me and want a solid answer on that when not even their doctors can give them a solid answer on traditional medications. It’s trial and error.”
Alex Needs Help
His parents tried Zoloft, Risperdal, Ativan, Valium and many more, but Alex’s condition did not seem to be improving. They didn’t like seeing him drugged and wanted a more natural solution.
“In terms of safety, there is nothing that we have to offer pharma- ceutically that can match the safety of cannabis,” he said when contacted for an earlier article. “In my own practice as a clinician, I have never come across a single pharmaceutical agent that is as well tolerated, and lacking in significant side effects, as cannabis.”
Jeremy received a recommendation from a physician in his home state of Oregon to treat his son with cannabis. For a time, a friend supplied the cannabis. Unfortunately, he and his wife knew next to nothing about cannabis, and were operating completely on a hit or miss basis. When they were able to get their son to ingest an ade- quate dose via cannabutter on Oreo cookies or another edible, he became visibly calm and at times seemed to experience joy. They’ve filmed before and after episodes that are on the blog. Jeremy reports that cannabis was more effective than any treatment they had tried.
While they did experience some success, when their sup- ply dried up, Alex’s condition spiraled into a crisis mode. Because they were new to the dysfunction surrounding the field of cannabis medicine, they were shocked to see a prohibition getting in their way of a safe treatment. On his blog, Jeremy documents his disillusionment with the United States government.
In the group home, Alex has been treated with Haldol, Ativan, Valium, and at least one medication that could kill him if the dose was just a bit too high.
“Marijuana is controversial because its long-term effects on a child are believed to be unknown, and possibly risky,” he writes, adding, “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 any- body can claim marijuana shouldn’t be an option.”
In the group home, Alex has been treated with Haldol, Ativan, Valium, and at least one medication that could kill him if the dose was just a bit too high. Unable to help their son with a therapy that was working, Jeremy and his wife believe that they failed him. Like many, the experience has politicized Jeremy, 35, who says he now watches to see how a politician treats the cannabis issue before voting. Prior to trying to treat Alex, he and his wife had never used marijuana and did not want to.
“My wife and I both grew up basically believing all of the propaganda,” he said. “I’ve tried it once to see if the dosing was right for Alex, but other than that, I don’t use it.”
Because they understand that cannabis helped their son and is a safe ther- apy, they’d like the staff at his son’s group home to use it. That will prob- ably not occur any time soon, what with federal agencies like the U.S. Department of Housing and Urban Development working hard to scare anyone offering any type of public housing assistance where cannabis is used, even in states with medical marijuana programs. Jeremy and his wife are receiving the same education that has turned millions into believers. This is also the same education that leaves just as many and more furious about tactics used by the U.S. Government.
“Prohibition is an utter failure.” said Jeremy, commenting on www.alexneedshelp.com “For us, it has meant that we don’t know how to get the right dose, what kind of dosing would work best, what strains could be better for Alex, etc. Basically, prohibition of cannabis has taken away a very good option for Alex’s medication choices.
In any elections in your area where marijuana initiatives are on the ballot, vote wisely — marijuana is one of the safest medications we have, and edu- cation is the most powerful weapon we have. I for one have decided to look at every politician’s drug policy stance as my number one issue prior to voting. Other issues are important to me, but none so much as ending the drug war.”