Pubdate: Sun, 14 Jul 2013
Source: Boston Globe Magazine, The (MA)
Copyright: 2013 Globe Newspaper Company
Contact:  http://www.boston.com/globe/magazine
Details: http://www.mapinc.org/media/3506
Author: Valerie Vande Panne

MEDICAL MARIJUANA FOR KIDS

It's here. It's legal. Yet parents are still afraid to ask for a drug
that may help.

HAILEY PEASE was 7 years old when she was diagnosed with T-cell acute
lymphoblastic leukemia. Her first round of chemotherapy, in April
2011, "didn't work," says her mother, Shannon Maxim. And the second
round "nearly killed her."

Hailey, who was being treated at Boston Children's Hospital, started
refusing her medicine, and then she stopped eating - a
common symptom of both the cancer and its treatments. Doctors threaded
a tube down her nose and into her stomach, making it possible to
administer food and medicine. "The chemo had destroyed her esophagus
to the point where she couldn't eat," says Maxim, a former certified
nursing assistant. Other parts of her body started to fail: "It was
like she was shutting down inside.

"She was heavily sedated. She was on dialysis. Her blood pressure was
unstable. They were literally adjusting seven to 10 medications," says
her mother. "It was a mess."

She had asked doctors to give Hailey Marinol, a synthetic form of a
chemical found in marijuana that is frequently prescribed to cancer
patients to fight nausea and stimulate appetite. Doctors hesitantly
agreed and administered a few doses, but Hailey said she didn't like
the way it made her feel. What's more, it didn't make her hungry. By
mid-June, doctors told Hailey's parents that there was nothing else to
be done. Children's Hospital has "an 'end of life' room, and that's
where they put her for three weeks," Maxim says.

In early July, Hailey told her parents she wanted to go home. Back in
Wareham, Hailey was given heavy pain medicine, now through an
intravenous line, and she continued to receive platelets and blood
transfusions at Children's three times a week.

During this period, a friend of Maxim's told her the story of a
Montana boy named Cash Hyde who suffered from brain cancer. His father
gave him medical oil of marijuana, according to news reports, which
seemed to help him tolerate and bounce back from the chemotherapy.
(Hyde died in 2012; his parents remain medical-marijuana activists.)
Maxim began to consider trying the same thing with her daughter.

Hailey, meanwhile, was sleeping more and more and still not eating.
Through a friend who had legal access to medical marijuana at a clinic
in a neighboring state, Maxim acquired small amounts of tincture as
well as butter, lollipops, and bread made with marijuana.

"I knew what was right and what felt right," Maxim says, though she
didn't bring up what she was thinking with anyone at Children's
Hospital because she was afraid of the state's Department of Children
and Families. She feared that if authorities found out, Hailey would
be taken away - and she didn't think she had much time
left with her. She also feared that because Hailey was so fragile and
weak, the marijuana might not be good for her. What if she died
immediately, Maxim says she asked herself. "What kind of a parent
gives their child marijuana? I was terrified I'd be responsible for
her death. I feel differently now."

Hailey had survived longer than the one month doctors had said she
would live. But she wasn't getting better. The friend who brought
Maxim the medical marijuana products had explained how to administer
them, saying she should start with a small amount of the tincture. If
need be, she could increase the dose, but the worst-case scenario, the
friend explained, was that Hailey would fall asleep - it
was not going to kill her. One day, Maxim decided it was time to give
it a try.

"We were getting ready to go to clinic for her blood transfusion," she
says. "While Hailey was sleeping, I put the tincture in the tube,"
which was how she still received nutrition. Maxim didn't tell Hailey.
She was concerned that if Hailey knew she'd been given a drug to make
her hungry, she might just say she was hungry, even if she wasn't. And
Maxim was very concerned about scaring her daughter - she
didn't know what Hailey had been taught about cannabis in school.

*

WHEN SHANNON MAXIM was struggling to help her daughter through
leukemia, medical marijuana was still illegal in Massachusetts. On
November 6, 2012, 63 percent of Massachusetts voters approved the use
of marijuana to treat conditions in circumstances where a doctor
thinks the benefits outweigh the risk. Eighteen states and the
District of Columbia recognize medical marijuana, according to the
National Conference of State Legislatures, and all but two of those
jurisdictions permit its use in children. The federal government still
considers marijuana a banned drug and has targeted medical marijuana
clinics and dispensaries, primarily in Western states, for
prosecution.

The Massachusetts law, which went into effect January 1 though final
regulations weren't approved until May, specifies that for medical
marijuana to be made available to children younger than 18, two
state-licensed physicians, at least one of whom specializes in
pediatrics, must agree the potential benefits of medical marijuana
outweigh the risks. (Adult patients need only one doctor.) In
addition, juvenile patients must have written consent from at least
one parent or guardian who understands the potential benefits and
harms and who will serve as caregiver. With those safeguards in place,
young patients facing ailments ranging from cancer to autism to
epilepsy may be treated with medical marijuana.

It's about time, says psychiatrist and longtime medical marijuana
advocate Dr. Lester Grinspoon, an associate professor emeritus at
Harvard Medical School. Grinspoon explains that marijuana has been
used to treat children in the United States since the 19th century,
when an alcohol-based solution called cannabis indica was taken for
pain from an ear infection or was rubbed onto an infant's gums to ease
teething. It was also used to treat seizures and epilepsy. He has
reviewed more than 100 clinical papers on marijuana's therapeutic
value written between the 1840s and 1900; the literature includes
marijuana's use in children. More recently, he says, it has been
employed to relieve the negative effects of chemotherapy, like nausea.
And for children with autism, it can help mitigate the outbursts and
destructive behaviors sometimes associated with the condition.

"I've been studying marijuana since 1967," says Grinspoon. "I started
to study it because I was so concerned about all of these young people
who used marijuana, that they were harming themselves. I believed all
the things everybody was told about it. My best friend at that time
was Carl Sagan, and I would tell him not to smoke it, and he would
say, 'Oh, Lester, it's harmless.' "

Grinspoon changed his mind after his own teenage son used marijuana
when he was undergoing treatment for lymphocytic leukemia in 1971; the
boy, Danny, died of the cancer in 1973. Danny found that medical
marijuana eased his suffering from chemotherapy. That inspired
Grinspoon to learn more. "I went to the Harvard library and started
reading," he says. "It fascinates me: one, the properties of the drug
itself, and two, that I and so many others had been so misled about
it."

But some doctors argue that there may be special dangers for young
people using medical marijuana. Dr. Sharon Levy, a pediatrician and
addiction specialist who runs the Adolescent Substance Abuse Program
at Children's Hospital, is one of them. "We all know [medical
marijuana] can relieve pain and stimulate appetite," but it can also
cause harm, she says. "Studies of adolescents exposed to marijuana
recreationally link marijuana use to mental health and thought
disorders," she says. "Exposure to marijuana during adolescence is
associated with IQ decline over long-term use." She notes that "these
weren't randomized controlled studies, but this is the best that's out
there."

"I'm a pediatrician and a parent," she says. "I think what we have to
evaluate is, if the child will survive, we need to protect their
brains." Children, she explains, are resilient. While parents might
witness helpful effects in the short term, it's "much harder to pick
up on long-term effects." If medical marijuana "relieves your child's
nausea but drops their IQ," that's problematic. (The subject is still
a touchy one. Levy was the only doctor Children's Hospital could make
available to speak on the topic of medical marijuana; no nurse or
doctor who has experience with terminally ill children could be found.)

Grinspoon sees things differently. "There are no double-blind
studies," he says, referring instead to decades of anecdotal evidence
of its benefits in some children with cancer, autism, and epilepsy.
"The question is: Is it more useful and less toxic than the
pharmaceuticals the child is getting? There is no question the
toxicity is very little. You just have to make sure not to give them
too much to make them uncomfortable." These days, he adds, cannabis
growers are able to produce marijuana that doesn't give the patient a
psychoactive "high," Grinspoon explains. "If I were prescribing for a
child, I'd insist the child get a strain high in CBD," or cannabidiol
(as opposed to THC, short for tetrahydrocannabinol, the compound that
pharmaceutical Marinol mimics).

Dr. Giannoula Lakka Klement, who specializes in rare tumors and
pediatric oncology and hematology at the Floating Hospital for
Children at Tufts Medical Center, brings up the serious long-term
consequences of chemotherapy and radiation for young cancer patients,
including lifelong learning disabilities and central nervous system
risks, especially on active brain development. Still, says Klement,
the treatments are "a way to keep the child alive.

"I think when you treat cancer, the risk-benefit ratio is skewed," she
continues. "You're dealing with a child who might die versus a child
who might end up with a lower IQ."

As for the risks and benefits of medical marijuana, "I tell my
patients to discuss it with me," she says. "Parents know I'm not
judgmental." Sometimes there are reasons for medical marijuana not to
be used, she says, but for the most part, "it's quite a benign drug."

Marinol has been around since the 1980s, and, like marijuana used as
medicine and some pharmaceuticals prescribed to children with cancer,
"there is very little information on it in pediatrics," says Dr. Peter
Adamson, chief of the Division of Clinical Pharmacology Therapeutics
at the Children's Hospital of Philadelphia and head of the Children's
Oncology Group, the largest organization in the world devoted
exclusively to researching cancers in children and
adolescents.

Grinspoon and other doctors say that synthetics based on marijuana are
not as effective as the real thing; that's because the plant contains
more than 80 compounds, giving it more therapeutic properties than a
drug like Marinol that mimics just one. "The major reason people use
Marinol is because of the law," Grinspoon says.

*

ABOUT AN HOUR AND A HALF after Maxim put the marijuana tincture into
the tube running into her daughter's stomach, they were on their way
to Boston Children's Hospital for a blood transfusion. When Maxim
stopped at McDonald's for coffee, as she always did on the way to the
hospital, she got a surprise. Hailey asked for a Happy Meal. "That was
the first day in two months she asked for food," Maxim says.

Hailey didn't want to eat right before her transfusion, but she asked
her mother to save the food for later. On the way home, though, Hailey
fell asleep. Maxim wasn't surprised; her daughter was always tired
after the trip and the procedure.

When Hailey briefly woke up, though, she was no longer hungry.
"Looking back now," Maxim says, "I had never asked how long the
effects last  . . . [and] I didn't think to give her another
dose." The next few days were intense. Hailey got sicker and sicker.
She passed away on July 28.

"I didn't try to give it to her again," Maxim recalls. "The only thing
that I look back and say I wish I'd done something different is I wish
I started medical marijuana sooner, I wish I continued it, I wish I
wasn't so scared."

Medical marijuana ought to be easy to bring up with your doctor,
Klement says. "You'll know immediately. If he or she is against it,
you'll know, and you'll know if they are for it. Just as there are
different types of patients, there are different types of doctors."
Cayenne Isaksen, director of public affairs at the Department of
Children and Families, stresses that children are dealt with on a
case-by-case basis and that the agency could intervene only if it
received a report of child abuse from a doctor, teacher, or other
person who had witnessed, for example, that medical marijuana was
being administered inappropriately.

Yet the fear Maxim describes is something parents are still dealing
with. No parent of a Massachusetts child currently being treated with
medical marijuana who was contacted for this story would speak on the
record or even anonymously, out of fear of losing custody of a gravely
ill child.

Where medical marijuana is most beneficial, all of the doctors
interviewed for this story agree, is for nausea and vomiting and in
alleviating the anorexia of a disease like cancer by stimulating appetite.

"I'm not ashamed of my story," Maxim says today. "We had a positive
experience, and we never got to see how much further it could've gone."
- ---
MAP posted-by: Matt