"Most parents are trying to keep their children away from marijuana. But it wasn’t a stretch for us to try anything to help our daughter."
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Do you know any 9-year-olds on cannabis? I didn’t either, until recently. It wasn’t something I ever expected, just like much of my current life.
When my daughter was less than a year old, I sat on a hard plastic chair at our local children’s hospital as the doctor told my husband, Cedar, and I that she had a rare genetic deletion — so rare it had no name. Our beautiful girl was missing DNA — unfortunately, a lot of it.
Under the harsh fluorescent lights, the geneticist explained that our child’s future was largely unknown. There were too few people with her condition to know how the genetic difference would affect her, but it would likely have a significant impact. Reality began to seem more like a dream as the doctor revealed that our child might not walk, talk or eat by mouth and could experience any number of medical issues, including a major heart problem or progressive hearing loss, along with moderate to severe developmental delays and behavioral challenges.
Soon after, our daughter endured multiple digestive problems, which required corrective intestinal surgery and a feeding tube. She could not eat orally and suffered profuse vomiting and chronic pneumonia. Nothing we tried seemed to help. No matter how many specialists and clinics we visited, we were unable to keep her well. Despite countless medical interventions, hospitalizations and procedures, her weight was abysmally low. This child, whom I loved wildly, was at risk for death.
Witnessing my beautiful, bright-eyed daughter suffer was, and still is, the most excruciating thing I have faced. I stumbled through various permutations of grief: a lot of crying alone in the car, self-blaming and comparing myself to other mothers — the kind of mothers I thought I would be. These mothers considered everyday parenting questions, like how much Halloween candy to allow. Meanwhile, my child couldn’t eat much of anything.
Therapy helped me process my feelings and experiences. As a relationship therapist myself for 15 years, I strongly believe that every good therapist needs a good therapist, especially when life veers far off plan.
We had another child at home who was three years older, and we worked to keep his life as steady as possible. My parents helped us immensely with the load of childcare and logistics of running a slightly disorganized home hospital. Over time, we were able to develop strong connections to buoy us, including an amazing nurse and her husband, who became family to us.
The author with her daughter as a baby.
Miraculously, my girl got older. She learned to walk and talk on her own timeline. She read as well as any elementary schooler, frequently flapped her hands with glee and pressed her face against my cheek as a kiss.
My daughter has a smile like a summer day and adores pop divas and any movies meant for tweens. Even when she was a toddler, we watched “Teen Beach Movie” snuggled together in the hospital crib I climbed into to be with her. When possible, we dance in nearly every room of our house. We sing together too; somehow, my daughter knows the words to almost any song played on the radio and can identify a tune based on just a few beginning notes.
Her vomiting slowed but never stopped, and her behavioral challenges began to escalate, matching the genetic profile for the SYT1-associated neurodevelopmental disorder that was discovered since the initial diagnosis, which correlated with her missing DNA. SYT1 symptoms include aggression and self-injurious behavior like head-banging and hitting one’s self.
When my daughter was in kindergarten, I sat on another hard plastic chair as a different provider handed my husband and me a stack of pamphlets to accompany her diagnosis of autism spectrum disorder. I wasn’t at all surprised. She had the limited social skills and the specific set of interests typical of an ASD diagnosis. (If my kid was going to have a deep passion, I was grateful that it was pop music and its requisite divas.) She is far from alone.
Autism affects one in 36 children in the United States; about 50% of children and adolescents with ASD have behavioral challenges.
Cedar and I found a special helmet to protect our child. She did not mean to hurt herself or others; because of her cognitive impairment, she becomes easily flooded with emotion. We tried many therapies — physical, occupational, applied behavior analysis and early intensive behavioral intervention — and so many drugs prescribed by psychiatrists. It wasn’t our daughter’s neurodiversity that we were trying to change. Her brain is cool and unique, and she is more fun than anyone I have ever met. We needed something to treat the volatility that caused her meltdowns, both to help her feel better and to keep her and everyone else in our family safe.
We first tried medical cannabis when our daughter was 5 years old, during the height of the pandemic. Our local public school district had recommended a level four placement in special education, which is a more restrictive environment than what a typical school offers. At home, we mostly kept our children apart; an adult was next to our daughter at every waking moment for safety reasons (not easy while sheltering in place in a rambler house).
Most parents are trying to keep their children away from marijuana — that is certainly our perspective for our older child — but it wasn’t a stretch for us to try anything to help our daughter. I knew that medical cannabis was sometimes prescribed for autism, so my husband and I asked our daughter’s psychiatrist about it. We also asked our pediatrician and several other providers about the safety and effectiveness of the drug. Eventually, we were referred to a neurologist, who provided information and answered our long list of questions. I also pored through research studies on the subject.
Because there was a reasonable chance that medical cannabis could help with our daughter’s ongoing discomfort, nausea and, most of all, aggression and self-injurious behavior, my husband and I agreed we needed to try it.
The cannabis seemed to help with our child’s anxiety for a bit, but not enough to justify the intervention. We stopped the treatment and shifted to an antipsychotic medicine approved for autism, which initially reduced the meltdowns and eased her impulsivity.
But three years later, we found ourselves desperate again. Our daughter’s anxiety was at full throttle, and her meltdowns were fierce and frequent. Because of her unique genetic makeup, many of the prescription drugs we hoped would calm our child instead elicited a paradoxical effect and increased her agitation.
We decided to try medical cannabis again because of a limited yet growing body of research suggesting it can be helpful for ASD, as well as studies that link CBD-rich cannabis to a reduction in aggression in high-severity cases of ASD.
With the expertise of a skilled pharmacist at a nearby medical dispensary, we landed on a small dose of a tincture with as little THC (the psychoactive component in cannabis) as possible to treat her specific medical concerns. We administer the liquid through a feeding tube, which is where our daughter gets all of her medications.
So far, after nearly two months, our daughter’s anxiety appears somewhat lower, and her nausea seems less acute. It is not a panacea; she still has meltdowns that can escalate. But she has vomited less since starting medical cannabis, which is a huge deal for her.
We plan to try other formulations (there are various approaches with different combinations of CBD and THC) to target those symptoms. If those are not effective, there are other interventions we intend to try too.
Like any medication, there are risks and side effects. Cannabis use is linked to psychosis and learning difficulties, among other dangers. And while medical cannabis is now legal in 38 states, including Minnesota, where I live, it is still against the law in a dozen of them.
More research is needed on medical cannabis, especially for use by children. Although the American Academy of Pediatrics recommended it for life-limiting or vastly debilitating conditions when other therapies have been insufficient, the Autism Science Foundation has stated, “To date, there is limited research, and no evidence, on the potential short-term, long-term or neurodevelopmental risks and benefits of medical marijuana or its related compounds in ASD.”
Because of the emerging nature of cannabis, it should only be administered after a thorough conversation with a trusted doctor who weighs the risks and benefits of the treatment. There are about 500 children who use medical cannabis in Minnesota.
I haven’t yet faced judgment about the choice to try medical cannabis to treat my child’s incapacitating symptoms. I’ve been open about what we’ve been through with those we are close to, as well as in my memoir, “The Unlikely Village of Eden.” Many people have a sense of how hard my husband and I, and our entire extended village, work to help our daughter.
This is not about getting her high, and they know that we don’t take a decision like this lightly after already exploring so many options.
If I do end up getting the side eye, I likely won’t have the time or energy to worry much about it. In my role as a mom and caregiver, I am used to standing apart from the crowd. Over the past almost a decade, my daughter and I have gotten countless stares in the grocery store and at the park. In those moments, I try to remember that we are far from the only family coping with a chronic, incapacitating condition and facing a life that did not go to plan. Telling our story serves as a reminder to me, and hopefully to others dealing with something similar, that we are not alone.
I’ve heard plenty of jokes lately, too, such as, ”Maybe you adults are the ones who need weed,” given our caregiving requirements. What I really need, most of all, is a miracle cure to take away my girl’s suffering. Short of that, I need to continue to feel hope, which includes access to innovative treatments.
Now, it’s medical cannabis. In a few months, seasons or years, it will likely be something else. Like any fierce, lovestruck mother, I am determined to try everything and will never stop advocating for my gorgeous, one-of-a-kind daughter.
Emma Nadler is an author, speaker and psychotherapist. Her memoir,“The Unlikely Village of Eden,” is about learning to adapt and accept when life doesn’t go to plan, redefining community and creating your own imperfect path. Emma lives in Minnesota with her (never boring) family. To learn more, visit EmmaNadler.com.
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