9-Year-Old Uses Cannabis to Stop Seizures, But Now Doctors Can’t Renew Her Prescription

By Lavonne Mireles-Clardy

29 minutes after birth, Sarah Wilkinson’s infant daughter endured her first traumatic seizure, an incident that became a daunting normality for her entire family. Her parents quickly learned that Mia was born with Ohtahara syndrome, an extremely rare epilepsy syndrome typically caused by a brain abnormality and usually fatal within the first two years of life.

Life for children who survive longer, like Mia, is difficult due to the severe disability that comes with the disorder, which has had a rippling effect on the entire family. Her parents spent years in a desperate search for something — anything — to reduce the number and intensity of seizures, which occurred at a rate of about 100 per day with the worst — called status seizures (more than 5 minutes) — lasting as long as 22 hours.

Conventional treatment for Mia’s terminal condition included “dilantin, and ketamine (horse tranquilizer), which resulted in acute liver failure” according to Sara Wilkinson, her mother. She and her husband were “desperate to try anything” to provide their daughter with a more comfortable existence.

In July 2013, they received approval from their neurologist to try medical cannabis treatments on their daughter.

Within 24 hours, an immediate change was visible. Just nine months after using orally-administered cannabis, Mia was averaging an astonishing 7 seizures a day. An electroencephalography test demonstrated that the treatment calmed her tremorous brain. It is common that “EEGs of those with Ohtahara syndrome reveal a characteristic pattern of high voltage spike wave discharge followed by little activity. This pattern is known as burst suppression,” explains the National institute of Neurological Disorders and Stroke.

“They said her EEG was comparable to someone with a benign form of epilepsy ─ that’s never happened before,” Sara said.  Miraculously, she was ultimately seizure free for 18 months, weaned off of 30-40 pharmaceuticals a day. Mia has also learned to walk and at nine years old, said her first words like “yes,” “no” and “Mama.” “And ‘Mama’ is all I hear anymore. I bawled when I first heard it,” Sara recounted.

Though as of now Mia is living an enjoyable life as a happy nine-year-old, her family is afraid that this will change. In just three weeks, Mia will no longer have the medical approval for cannabis from her doctor, who is currently barred from restoring the prescription. Because of the Alberta Health Services “strict nature of implemented [hospital] policy, [he] is not allowed to fill out the forms for renewal of medical marijuana,” reads an email as related by the doctor to the family. He reported that Alberta Health Services “[does] not support the prescription of medical marijuana for pediatric patients with epilepsy at this time. Physicians provide prescriptions on a case by case basis, using their professional judgement.”

Medical marijuana patients in Canada who are not children, according to Health Canada websites, also benefit from this treatment in a multitude of ways:

BY THE NUMBERS:

** 40,000 medical marijuana users in Canada
** 3M medical marijuana plants cultivated in Canada last year
** 31 medical conditions treatable with a marijuana prescription
** $1.3B medical marijuana market by 2024

With these statistics, there should be no argument over the need for alternative treatments for pediatric patients in addition to adults. Why allow children to suffer?

News Calgary reported on this story as well. Watch the full video here:

There is reportedly not enough research—in Canada or elsewhere— to support the reasons why patients with this debilitating neurological condition should be allowed to utilize natural medical cannabis treatments.

After some digging, the Anti-Media contacted Ken Lowenberg of the Epilepsy Foundation to request information regarding verifiable medical research on this potentially life-saving treatment. Happily, he reported that,

The Epilepsy Foundation supports the rights of patients and families living with seizures and epilepsy to access physician directed care, including medical marijuana. Nothing should stand in the way of patients gaining access to potentially life-saving treatment. If a patient and their healthcare professionals feel that the potential benefits of medical marijuana for uncontrolled epilepsy outweigh the risks, then families need to have that legal option now—not in five years or ten years. For people living with severe uncontrolled epilepsy, time is not on their side. This is a very important, difficult, and personal decision that should be made by a patient and family working with their healthcare team.

Further, Dr. Orrin Devinsky (M.D., Professor of Neurology, Neurosurgery and Psychiatry, Director, NYU Comprehensive Epilepsy Center; Member of Epilepsy Foundation National Board of Directors), says,

…[As] a doctor, I would gladly prescribe marijuana products for many of my patients who failed existing therapies if it were legal in my state. Trying marijuana or related compounds should be regarded like any other experimental treatment – a shared decision between patient/parent and doctor, that takes into account the severity of disease, risk and benefits of treatment, and existence of alternate treatment options, all guided by the principle of ‘first do no harm.’ Until we have the scientific data, we should make medical marijuana available to physicians who care for people with treatment-resistant epilepsy and their patients.

Dr. Devinsky makes an excellent point. The guided principle of “do no harm” is often ignored by a collective refusal to adapt new treatments that may improve wellness for patients.

One could argue that prohibiting this child from a treatment that has dramatically improved her life is nothing but negligent — and will result in her declining health and ultimately, an uncomfortable remaining existence.

Lavonne Mireles-Clardy writes for theAntiMedia.org. Anti-Media Radio airs weeknights at 11pm Eastern/8pm Pacific. Image credit: ctvnews.ca.

Lavonne Mireles-Clardy joined Anti-Media as an independent journalist in August of 2012. Her topics of interest include health, wellness, science and innovation, gardening and seed-saving, metaphysics, and meditation. Living in Lemon Grove, she hosts Anti-Media Radio on Friday’s. Learn more about Mireles-Clardy here!