Raising a child with a disease is a struggle for any parent, but when one California mother saw her autistic 9-year-old drop down to 42 pounds, she made a decision to try anything that might help him. Joey had been diagnosed with anorexia and malnutrition, conditions directly associated with the pharmaceuticals being used to treat his autism. Joey’s mother, Mieko Hester-Perez, searched desperately for anything that could help her son and, after much research, she finally came upon medical marijuana as a possible solution.
When speaking about her decision to treat her son with medical marijuana, Hester-Perez said, “My stance was pro-life… my son needed a better quality of life if he was going to perish from these medications used to treat autism.” Ultimately, armed with the research she had collected, she met with Joey’s psychiatrist to discuss using medical marijuana to treat his condition. “The decision was made between me and his psychiatrist. She had never treated a child at 9 years old with cannabis before, but because my son had dropped down to 42 pounds, we knew that it was only a matter of time before we lost Joey.”
Hester-Perez’s advocacy organization, the Unconventional Foundation for Autism, tells the story of other parents who have used cannabis to reduce nausea and increase the appetite of children going through chemotherapy when treating cancer. Other parents have used medical marijuana to treat seizure disorders such as epilepsy or Dravet syndrome. In these cases, cannabis can be especially helpful in mitigating the side effects of pharmaceutical drugs, which can often take a heavy toll on a developing body.
Bio-pharma companies are looking to harness their R&D to create strains specifically for ailments suffered by children, such as Canada’s MediJean. The British Columbian company recently announced it is developing marijuana just for children.
As a press release describes it, “Each strain will be designed to reduce or eliminate the psychoactive effects of Tetrahydrocannabinol (THC), through the application of an elevated terpene structure, coupled with balanced levels of Cannabidiol (CBD) and THC.”
Making the final decision on whether or not to treat their child with medical marijuana can often be a hard one for parents – but as in the case of Hester-Perez and her son, the conversation about using medical marijuana is similar to the discussion about any autism treatment. “We also had the same conversation with the medications they are experimenting with… It may work, it may not work.”
In the case of using marijuana to treat autism, the prospects are particularly interesting because so little is known about the condition itself. In the case of Mieko and her son Joey, “there were no rules” on how to treat him with marijuana “because doctors are still trying to figure out this autism situation. As of right now there are only two medications that are used to treat autism symptoms.” Apart from the two approved medications, there are fifteen others offered to parents of autistic children – all of which are experimental. Joey exhausted 14 such medication options before cannabis.
Before Hester-Perez used cannabis to treat his autism, school for Joey was more focused on behavior than education as his erratic and sometimes violent actions made him unpredictable and difficult to teach. Hester-Perez, who also had a 6-month-old at the time, was worried Joey might accidentally hurt her other son.
Today, Joey is no longer suffering from malnutrition and maintains a healthy body weight. He is also doing very well in school. Joey recently received a Presidential award for his academics and is a 4.0 student. As Hester-Perez put it, “within four years my son has turned into a model student… most of the symptoms that are used to assess for autism, Joey no longer has.”
While Joey’s transformation is undeniable, some parents have not been able to achieve the same result, usually because of the legal and logistical issues associated with treating children with medical marijuana. One Oregon father, Jeremy Echols, had problems finding out how to properly administer his son’s medication. Alex, who also suffers from autism, was first given medical marijuana at 9 years old, and for the most part, results were very positive. Medical marijuana calmed Alex down and reduced some of his erratic, violent and sometimes self-injurious behavior. The problem, however, was getting Alex to take his medication and finding the right dose and strain.
Since there is so little research on treating children with medical marijuana and even less is known about autism, it is extremely difficult for parents to learn how to give their children this medication. Because of Alex’s erratic behavior, it was often difficult for his parents to treat him. He would often refuse to eat the hash- or marijuana-infused food he was given. There was also a trial-and-error period of finding the right dose and strain.
When Alex did take medical marijuana, he was calmer and more interactive. One specific strain of hash that had been donated to Alex seemed to make him particularly interactive and aware, using his hands to explore the world around him, which is something he rarely did. Eventually, when the donated hash ran out, the Echolses were unable to obtain the same strain. Currently, Alex lives in a group home where his family visits him regularly. Unfortunately, the home will not administer medical marijuana because it receives federal funding, which the use of medical marijuana would jeopardize.
Despite medical marijuana being legal in many places, there are still considerable barriers with regard to use on children. Another California family we interviewed has a 17-year-old son who uses medical marijuana to treat his depression. His mother, Linda Jimenez, who also uses medical marijuana to treat her chronic pain, approves of her son’s decision to use it. “Some of these [other prescription] medications can make you more depressed or even suicidal if you’re on the wrong medication… this is not the case with medical marijuana.” In Linda’s own experiences with dealing with depression, she was prescribed Cymbalta, which made her feel unaware and “out of it.”
Medical marijuana also allows Linda’s son to treat the symptoms of his depression on the spot when he needs to; and because there is no adjustment period for the medication to build up in the system, results are immediate. As effective as the medication was, Linda’s son was forced to stop using medical marijuana for a brief period because of problems at school. When he had been put on academic probation, which required periodic drug testing as well, he could no longer use medical marijuana to treat his depression. Despite the fact that medical marijuana is legal in California, the Solano County school district did not recognize the legitimacy of medical marijuana for her son.
For parents treating children with debilitating illnesses, the choice to use medical marijuana is a relatively easy one when all other options have been exhausted. Most parents of children choose to cook marijuana into their child’s food or obtain hash oil that can be administered orally rather than having their children smoke it, which can be damaging to the lungs.
Marijuana can be a very effective way of treating childhood illnesses, and as the technology and knowledge about medical marijuana are rapidly increasing there are new opportunities for more effective treatments. According to Morgan Fox of the Marijuana Policy Project, there is considerable research into the development of strains of marijuana with high levels of CBD. CBD is a compound within marijuana that is responsible for many of its positive medical effects. Unlike THC, it does not cause feelings of intoxication or affect a child’s mental state, and thus parents often prefer high-CBD strains. There are facilities that can test the attributes of marijuana, including the presence of bacteria or pesticide, in order to ensure that the medicine is as safe as possible for children to use.
The interest is reaching a fever pitch: A clinical trial of CBD in children with epilepsy is under way at New York University, as the Globe & Mail writes. In Calgary, a pediatric neurologist has suggested a study of CBD and another Canadian group is looking into conducting a clinical trial at the Hospital for Sick Children in Toronto.
Photos courtesy Jeremy Echols, Linda Jimenez
Matthew De Luca grew up in Smithtown, New York, a suburb on Long Island and currently lives in Queens, New York. He is a graduate of George Washington University in D.C., where he earned a B.A. in International Affairs with a concentration in International Development Studies. He is currently seeking a Masters degree in Public Affairs at Baruch College in New York City.