Pubdate: Mon, 02 May 2016
Source: Ottawa Citizen (CN ON)
Copyright: 2016 Postmedia Network Inc.
Contact:  http://www.ottawacitizen.com/
Details: http://www.mapinc.org/media/326
Author: Kelly Egan
Page: A1

MOTHER FIGHTS TO GIVE ILL CHILD POT OIL

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 damnedest 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 girl who is 
primary-school age. 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, which she has endured more than 
two dozen times, at the Children's Hospital of Eastern Ontario.

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,'" the mother said.

But it sent her 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 CBD, or cannabidiol.

The mother said she visited all the marijuana clinics she could and 
raised it with the physician who regularly treated her child.

"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; the mother then saw the "scan" 
of her daughter's airways.

"There was a huge difference," the mother said. "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," the mother said.

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 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 pediatric 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, which are 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."

Rieder was asked if the use of cannabis was controversial in 
pediatric 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.
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MAP posted-by: Jay Bergstrom