Motivated by love and desperation, an area mother is fighting an uphill battle to treat her daughter’s chronic illness with a special cannabis oil.
The establishment, predictably, is against her: the doctors aren’t keen; the child-welfare authorities aren’t amused; her ex-husband, the child’s father, called the cops.
Still, she soldiers on, with the dedication a mother feels deepest, determined to alleviate her child’s chronic respiratory condition.
“I’m trying my damndest to help my daughter and to fight for other parents who just want to help their kids,” she told the Citizen. “Nothing else has ever worked.”
In order to protect the woman’s identity — also guarded by child-welfare laws — the Citizen has decided not to use names, places, age or other identifying characteristics about the child, a primary-school aged girl.
It is, frankly, too remarkable to ignore, a story that opens this huge ethical window into how — in an era of legal, widespread medical marijuana use — we treat childhood illnesses that could benefit from the powers of pot. (“Pot for tots” is the issue’s label in the United States)
The Canadian Paediatric Society has gone so far as to issue a position paper, with a mostly negative, cautionary tone. On the other hand, some parents with epileptic children are increasingly convinced of the wonders of cannabis in controlling seizures. (Anecdotal evidence abounds.)
The girl in question suffers from a rare condition (which we won’t name) that results in tumours regularly growing in her breathing passages. The only real treatment is surgery, of which she has endured more than two dozen at the Children’s Hospital of Eastern Ontario.
The possibility of using marijuana was first suggested by a friend about three years ago, the mother said, because he used it successfully to treat his symptoms of PTSD. “I laughed at him and said ‘You’re crazy.’” But it sent the mother on a path. She began researching the medical benefits of cannabis and discussing the matter online, in forums for the similarly afflicted.
She learned about Charlotte’s Web, the name given to a cannabis oil made especially for children. Legally produced in the U.S., it is low in THC, marijuana’s psychoactive compound, but high in so-called CBD, or cannabidiol.
The mother said she visited all the marijuana clinics she could and raised it with the physician who was regularly treating her daughter. “He shut me down,” claiming he did not know enough about CBD to prescribe it, she said. Meanwhile, her daughter needed eight to nine surgeries a year just to survive.
This became her great dilemma: She could not find a physician who would prescribe the oil for the girl and monitor its effects. So she decided to go it alone. How much worse could it be, she thought, than the powerful drugs conventional medicine was trying unsuccessfully?
She got her own medical marijuana licence (citing depression and anxiety), and ordered some product. Painstakingly, she made the first batch of oil and administered it with food in December.
Her daughter had a surgery in January and the mother later saw the “scan” of her airways. “There was a huge difference. The growth had changed. The way the disease looked had changed.”
She said she told her CHEO doctor what she was doing. In March, another surgery was needed. She saw the image. “That was the best airway I’d ever seen.”
She explained to the girl’s father what she was doing. She believed they were in agreement about the treatment. However, the next time he had weekend custody, the mother says he called the police. The child was taken to the hospital for a urine and blood test, where cannabis was detected.
The child welfare authorities called her that weekend to break the news. The girl would stay with her father until this was sorted out. As the primary caregiver all the child’s life, the mother admits: “I totally lost it.”
She says she explained the whole story to the police, who declined to pursue charges. The father, meanwhile, was attempting to gain custody, claiming she was an unfit mother who was not qualified to be making medical decisions on the child’s behalf.
She got her daughter back several days later, but only after agreeing to stop the CBD treatment. She said the family court judge wants to see a clean urine test in June to ensure she is complying.
“Since I’ve stopped, (the illness) has come back more aggressively, but they can’t explain it.”
She, meanwhile, is committed to finding a physician who will prescribe the CBD to the child, so there is no issue about medical supervision.
Dr. Michael Rieder wrote the position paper for the national paediatric society.
“That’s a tough sell for me,” he said, when told of the child’s condition. “There’s no evidence that I’m aware of that it has any effect on that kind of stuff.”
It has long been known that cannabis can help reduce seizures, he said, because it works on the brain receptors and neurological system. Even at that, however, physicians don’t have the usual comfort level they have with other medications, normally backed by scientific trials.
“Evidence supporting the therapeutic effect of cannabis in children with epilepsy is sparse,” the paper states. It is full of caution because the adverse effects of cannabis, particularly on early brain development, are worrisome.
“There is biological plausibility that cannabis may produce harm if used to treat conditions in children, especially when started at an early age.”
Dr. Rieder was asked if the use of cannabis was controversial in paediatric circles.
“Highly,” he said. “Most won’t touch it.”
And so a mother is left alone, operating on her own intuition, in a high-stakes game of hope versus science.
Full Article: Canadian Mom Battles To Give Daughter Medical Cannabis, Fends Off Police And CAS
Author: Kelly Egan
Contact: Ottawa Citizen
Photo Credit: CBD UK
Website: Ottawa Citizen