What it’s like to be a kid who medicates with cannabis

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January
15,
2020




 
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medical marijuana patient, children who medicate with cannabis, children and marijuana

(Courtesy
of
the
Turner
family)

It’s
awful
that
there
are
sick
children
in
this
world,
that
someone
so
young
could
already
be
tied
to
grown-up
matters
like
mandatory
daily
medicine.
Unfortunately,
it’s
a
very
real
situation
for
many
families,
and
its
complications
are
made
considerably
more
so
when
that
medicine
is
federally
illegal.
But,
due
to
the
extensive
nature
of
the

endocannabinoid
system
(ECS)
,
cannabis
can
be
used
to
fight
many
diseases—and
many
of
these
ailments
can
affect
people
of
all
ages,
not
just
adults.

We
talked
with
a
couple
of
families
with
children
who
regularly
medicate
with
cannabis,
aiming
to
get
a
picture
at
what
this
lifestyle
is
like,
what
kinds
of
challenges
they
face,
and
how
cannabis
has
transformed
their
lives.
We
discovered
stunning
stories
of
improvement,
innovation,
and
a
couple
of
families
who’ll
make
you
wish
there
was
a
bigger
word
for
“inspiring.”

Sophie
Ryan,
optic
pathway
glioma
brain
tumor

medical marijuana patient, children who medicate with cannabis, children and marijuana

(Courtesy
of
the
Ryan
family)

Sophie
Ryan
was
born
October
3,
2012
a
perfectly
healthy
baby
girl.
But
it
wasn’t
even
a
year
before
an
MRI
diagnosed
an
optic
pathway
glioma
brain
tumor,
which
doesn’t
normally
shrink
with
chemo.
Things
didn’t
look
good.
Then
her
parents
created
a
Facebook
page
called
“Prayers
for
Sophie,”
and
a
friend
put
them
in
touch
with
Ricki
Lake
and
Abby
Epstein,
who
were
filming



Weed
the
People
,
a
documentary
about
the
possibility
of
cannabis
oils
treating
cancer
in
pediatric
patients.

In
a
phone
interview
with
Leafly,
Sophie’s
mother,
Tracy,
told
us
that
Sophie
took
her
first
cannabis
medicine
at
9
months
old
in
the
film—a
drop
of
high-concentrated
CBD
and
THC
oil
on
top
of
her
food
before
beginning
chemo
treatment.
Because
Sophie
was
just
a
baby,
they
had
to
watch
her
mannerisms
to
try
and
gauge
dosing,
but
the
only
side
effects
they’ve
noted
was
sleepiness
at
the
beginning,
and
a
higher
appetite,
which
is
perfect
for
a
chemo
patient.

After
13
months
of
chemo
and
high
doses
of
cannabis
oil,
Sophie’s
“unshrinkable”
brain
tumor
was
about
85
to
90%
gone.
Tracy
shared
with
Leafly
that
even
Sophie’s
doctor,
who
was
originally
skeptical
about
cannabis,
had
to
concede
that
cannabis
must
have
helped.

Its’
not
just
in
results
that
Sophie’s
cannabis
treatment differs
from
chemo,
her
parents
note.
In
addition
to
being
more
expensive,
Tracy
said,
“Chemotherapy
makes
you
very
sick,
it
destroys
your
immune
system,
it
causes
organ
failure.
They
lose
their
hair,
they
get
sores
all
over
their
bodies
and
inside
their
mouths…
Sophie
was
getting
chemo
burns
when
she
was
in
diapers
and
we’d
have
to
use
gloves
so
we
wouldn’t
get
the
chemo
acids
on
our
skin—it’s
that
horrible.
And
then
you
have
cannabis,
and
it’s
doing
the
opposite
of
all
that.”

Fortunately,
Tracy
hasn’t
gotten
much
judgement.
She
works
to
ensure
that
she’s
a
trusted
voice,
making
sure
she’s
on
top
of
research
and
bringing
Sophie
to
lots
of
speaking
engagements
to
show
proof
of
how
healthy
she
feels,
despite
chemo.
(Tracy
said
Sophie
is
a
natural
and
loves
doing
these
events,
with
rare
exceptions.)

medical marijuana patient, children who medicate with cannabis, children and marijuana

(Courtesy
of
the
Ryan
family)

After
discovering
the
incredible
ways
cannabis
could
heal,
Tracy
decided
to
create
her
own
business,
CannaKids.
They’re
now
selling
high
quality
tinctures
and
syringes
throughout
California
and
are
working
on
expanding
to
Canada
and
Australia,
as
well
as
starting
a
nationwide
hemp
line
with
6-9
cannabinoids.
Like
many,
legalization
presented
some
significant
issues,
with
Tracy
sharing
that
her
business
“almost
didn’t
survive
the
costs
and
demands
of
legalization.”
For
instance,
they
have
had
to
change
the
name
because
of
laws
about
marketing
cannabis
to
children;
CKSoul
is
the
new
product
line,
and
CannaKids
will
continue
to
operate
as
a
non-commercial
resource.

They’ve
also
started
a
foundation
called
Saving
Sophie,
which
has
raised
$60k
but
Tracy
said,
“That’s
like
a
week’s
work
in
a
laboratory.
They’ll
need
about
a
half
million
to
get
rolling.”
And
the
Ryans
have
also
started
a
podcast
to
promote
awareness
and
raise
funds—check
it
out
here
.

Coltyn
Turner,
Crohn’s
disease

medical marijuana patient, children who medicate with cannabis, children and marijuana

(Courtesy
of
the
Turner
family)

Coltyn
Turner
developed
Crohn’s
disease
when
he
was
11
years
old,
after
a
near-drowning
incident
led
to
a
bacterial
infection.
For
the
next
three
years,
he’d
try
various
traditional
treatments,
which
he
and
his
mother,
Wendy,
say
nearly
killed
him.
In
a
phone
interview
with
Leafly,
Coltyn
shared,
“The
pharmaceutical
medications
that
I’ve
tried
[range
from] pills
that
do
absolutely
nothing,
to
shots
that
gave
me
nosebleeds,
profusely,
for
15
minutes
straight,
[to] another
chemo-like
infusion
treatment
gave
me
medically-induced
rheumatoid
arthritis
(RA)
and

lupus
.”

You
read
that
right.
Coltyn
and
his
family
report
that
traditional
medications
left
him
with
two
more
chronic
illnesses,
each
capable
of
rendering
a
person
debilitatingly
ill
on
their
own.
Yet,
there’s
more.

They
eventually
tried
cannabis.
“When
I
got
introduced
to
cannabis,
within
the
first
two
weeks
I
was
already
out
of
my
wheelchair.
I
felt
like
a
normal
kid
again,”
Coltyn
said.

And
he’s
got
proof
of
the
positive
changes.
“I
[went
from] 22
centimeters
of
inflamed
bowel
with
skin
lesions,
with
everything
you
can
imagine—inflammation,
ulcers,
scar
tissue,
granulation
lymphoma—to
a
normal
colon;
no
active
Crohn’s
disease,
just
using
cannabis.
So
not
only
did
cannabis
treat
the
pain,
which
is
important,
but
it
also
took
care
of
what
was
causing
the
pain.
It
also
helps
with
the
RA
and
lupus
I
got
from
the
[pharmaceuticals].”

medical marijuana patient, children who medicate with cannabis, children and marijuana

(Courtesy
of
the
Turner
family)

Coltyn
is
now
19
years
old,
having
been
on
cannabis
for
five
years.
And
his
Crohn’s
is
in
remission;
they
report
hardly
ever
having
to
go
to
the
doctor
these
days.
He
still
occasionally
gets
symptom
flares,
but
is
able
to
control
them
by
upping
his
cannabis
dose
during
those
times.
They’ve
a
great
handle
on
it
these
days,
but
they
say
there
were
some
challenges
early
on.

Wendy
said
the
main
challenge
is
dosing
and
ensuring
that
Coltyn
gets
the
right
amount
of
cannabinoids
without
getting
high.
“We
are
constantly
like,
‘How
are
you
doing,
how
are
you
feeling?’”
she
said.
“He
must
be
really,
really
sick
of
it.”

But
Coltyn
isn’t
phased.
“Yeah,
I
am,
but
at
the
same
time
it’s
very
important
because
a
lot
of
patients
don’t
really
know
their
dose,
especially
earlier
in
their
cannabis
treatment,
and
you’re
changing
it
pretty
frequently,”
he
said.
“When
I
first
moved
out
of
Colorado
to
start
cannabis
treatment,
we
kept
a
journal
and
wrote
down
every
little
thing
that
happened:
what
I
ate
that
day,
how
many
times
I
went
to
the
bathroom–if
I
had
a
stick
of
gum,
we
wrote
it
down.
Unfortunately
that’s
the
only
way
to
develop
a
regimen
for
people,
through
trial
and
error,
trying
everything
under
the
sun
until
you
find
something
that
works
best
for
you.”

Wendy
shares
that
there
were
some
learning
curves
on
their
path.
“Sometimes
we
mess
up.
For
instance,
now
we
know
to
never
give
a
Crohn’s
patient

THCV
.”

Coltyn
adds,
“What
we
know
about
THCV
is
that
it’s
an
appetite
suppressant.
For
someone
with
a
wasting
syndrome,
that’s
not
a
good
cannabinoid
to
have.
But
we
didn’t
figure
it
out
until
I
lost
10
pounds.
That’s
the
struggle
with
there
being
no
research
or
anything.”

As
far
as
medicating
during
school,
Coltyn
said,
“Fortunately,
I’ve
been
homeschooled
my
whole
life,
but
there
are
kids
who
are
having
trouble
having
medicine
in
school.
A
lot
of
the
time
they
aren’t
even
allowed
to
have
it
200
or
1,000
feet
from
a
school.
There
are
kids
with
seizures
who
go
to
public
school,
and
if
they
need
a
rescue
med,
they
have
to
have
their
parent
come
to
school,
pick
them
up,
drive
off
campus,
administer
it,
then
bring
them
back.”

medical marijuana patient, children who medicate with cannabis, children and marijuana

(Courtesy
of
the
Turner
family)

Wendy
said
that
legalization
has
affected
this
issue
negatively.
“These
newly
legalized
states
emerging
and
creating
regulation
issues
in
schools
with
zero
tolerance
laws.
Coltyn
attended
school
for
38
days
and
we
took
him
out
because
we
couldn’t
deal
with
it.
There’s
not
a
feasible
option
for
it,
not
even
in
college.”

She
added
that
there
is
a
student


suing
their
school

over
this
issue,
and
said
it’s
crazy
that
pharmaceuticals,
which
can
kill
you
if
abused,
are
allowed
in
school,
but
cannabis
isn’t.

Wendy
said
that
without
interstate
commerce,
medicating
can
also
be
a
challenging
task
when
getting
medical
care.
“Every
person
who
has
a
medical
card
is
a
prisoner
of
that
state,”
she
said.
“Most
of
Coltyn’s
doctors
are
across
state
lines
in
Missouri
and
the
second
we
cross
that
state
line,
Coltyn
is
illegal.
And
if
he
were
to
break
his
arm
or
something,
I
would
have
to
tell
them
that
he’s
medicated
with
THC.
And
I
cannot
give
him
those
meds
for
Crohn’s
disease
if
he
were
to
have
to
stay
in
the
hospital
for
this
broken
arm
for
more
than
a
day.
So,
there
we
go,
into
a
flare
with
his
Crohn’s
disease.”

When
asked
if
they’ve
faced
much
judgement
for
medicating
Coltyn
with
cannabis,
they
happily
report
that
they
don’t.
Tracy
shared
that
it
probably
has
a
lot
to
do
with
her
being
an
intimidating
mom,
ready
to
get
into
the
facts
and
statistics
with
doctors
and
other
medical
professionals
as
needed.

medical marijuana patient, children who medicate with cannabis, children and marijuana

(Courtesy
of
the
Turner
family)

And
their
advocacy
for
cannabis
doesn’t
end
there.


The
Coltyn
Turner
Foundation

is
focused
on
research
and
raising
the
funds
to
get
it
done–their
first
project
is
a
survey
of
Crohn’s
patients
using
cannabis,
which
is
aimed
at
getting
solid
data
on
how
it’s
working
in
their
systems
that
can
be
used
as
a
resource
for
other
patients.
“I
felt
like
it
was
important,
Coltyn
said.
“All
the
time
I
approach
doctors
and
patients
who
don’t
know
that
cannabis
works,
and
the
one
thing
they
say
is
‘there’s
no
research.’”

His
mother
added
that
that
isn’t
the
whole
truth,
“One
of
the
problems
we
have
in
the
states
is
our
ego,
especially
with
these
doctors
who
say
‘there’s
no
research,’
just
because
the
research
isn’t
coming
from
the
US,
which
has
to
go
through
the
DEA
and
other
enforcement
agencies,”
which,
of
course,
aren’t
big
fans
of
approving
studies
with
Schedule
I
drugs—an
infuriatingly
circular
dilemma.
But
Coltyn’s
up
for
the
challenge.

“When
the
government
doesn’t
do
something
right,
the
people
have
to
do
it
themselves,”
he
said. “I’d
rather
be


illegally
alive

than
legally
dead.”




 
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Meg Hartley's Bio Image

Meg
Hartley

Meg
Hartley
is
an
Alaska-grown
cannabis
writer
and
advocate
who
now
lives
and
loves
in
Long
Beach,
California.

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