the science of cannabis has really
evolved last four years and we
understand a lot about the biology
cannabidiol is the non psychoactive
ingredient in marijuana and since it is
non psychoactive one feels the potential
harm is going to be much less and since
some of these children had truly
devastating epilepsies in which the
seizures and the high doses of many
drugs that doctors like myself were
prescribing because really tremendous
problems for these children
the first thing I tell people is you are
a unique individual your chemistry is in
there is unique to you you could have
the same exact diagnosis of the last guy
that walked in here but you may respond
differently to a different strain of
cannabis a different dose of cannabis a
different method of using it I don’t
know the answer and I don’t think
anybody else knows the answers there’s
this this crazy dissociation between
what’s happening at a federal level of
incredible restriction on safe things
and a state level where it’s a little
bit of the Wild West and states are
allowing parents to play doctor and play
chemist when they really don’t have that
experience every two and a half hours
okay she’s gonna get a dough
there is no one that will tell me that a
parent this spends as much time with our
child if we do does not know what’s best
for them
Mele was born March 6 2012 week later we
started noticing some spasms about four
months old we realized that something
was wrong to the hospital and determent
they were seizures she was having
roughly I don’t know somewhere probably
in the vicinity of 700 today they
diagnosed her with infantile spasms with
hips arrhythmia I’m almost immediately
and put her on three different
medications as well as started the
ketogenic diet she did not progress at
all she was not growing she was not
gaining weight the doctors had given us
a point one percent chance that she
would really do anything they kind of
felt like that they had done everything
they could do there was no diagnosis
therefore there was no prognosis we just
felt like our hands were kind of tied
you don’t want to believe what they’re
telling you and so you try and find
alternative solutions and thankfully we
found one
we ended up you know leaving you know a
quarter of our possessions behind
selling our business and we made the
journey to Colorado our neurologist told
us that she can’t prescribe it she knows
nothing about it it hasn’t been studied
but that she recommend we do what we
need to in order to help Milly you don’t
that stuff cleaned out yeah we started
Charlotte’s Web right around her
birthday and within the first 15 minutes
of her first dose she was wide awake and
looking around and I mean I was just
crying I couldn’t believe it
yeah probably within the first 90 days
we noticed about a 75 to 90% reduction
in seizures I mean we’ve had extended
periods of time that we’ve had no
seizure activity and when I say extended
periods of time nine days 14 days we’ve
had times where we backed off and not
giving her doses of CBD for upwards of a
week maybe a little more and then we
have times when we will have to increase
their CBD it’s not as complicated now
that once was we first got here was a
little scary it was a little difficult
trying to figure it all out it really
has been a lot of trial and error it was
all parental experience asking other
parents you know hey when you see this
seizure what do you do it gets
frustrating and then you find the sweet
spot and you think yes we did it
anything really consider off and sort of
make it throw off the whole balance it’s
kind of a two steps forward one step
back
we have some seizure activity that are a
bit more violent that are more painful I
think the most difficult part is there’s
nothing you can do about it and
basically just have to wait it out there
are days that I don’t know that I feel
like it’s hard for me to know and then
there are days that I feel very elated
and very joyful then we have her
we’ve gone from a place where we didn’t
think we would have our daughter with us
very long and trying to make every
minute count
so now we feel like we have prolonged
her life that there is an opportunity
for her to grow and maybe Walt Hulk do
some of those things that you never
thought were imaginable you know I don’t
know what the future holds for us you
know it is a very real possibility that
mentally could have a seizure and never
come out of it for Millie’s future I see
a lot of beating the odds I see a lot of
improvement I think that she’s I think
she’s really gonna make the history
books
Colorado has given us an opportunity to
be parents to make decisions that we
feel are best for our children I don’t
know exactly why people are so afraid of
this but I think it is harm now that we
need to put that behind us and move on
you
evolved last four years and we
understand a lot about the biology
cannabidiol is the non psychoactive
ingredient in marijuana and since it is
non psychoactive one feels the potential
harm is going to be much less and since
some of these children had truly
devastating epilepsies in which the
seizures and the high doses of many
drugs that doctors like myself were
prescribing because really tremendous
problems for these children
the first thing I tell people is you are
a unique individual your chemistry is in
there is unique to you you could have
the same exact diagnosis of the last guy
that walked in here but you may respond
differently to a different strain of
cannabis a different dose of cannabis a
different method of using it I don’t
know the answer and I don’t think
anybody else knows the answers there’s
this this crazy dissociation between
what’s happening at a federal level of
incredible restriction on safe things
and a state level where it’s a little
bit of the Wild West and states are
allowing parents to play doctor and play
chemist when they really don’t have that
experience every two and a half hours
okay she’s gonna get a dough
there is no one that will tell me that a
parent this spends as much time with our
child if we do does not know what’s best
for them
Mele was born March 6 2012 week later we
started noticing some spasms about four
months old we realized that something
was wrong to the hospital and determent
they were seizures she was having
roughly I don’t know somewhere probably
in the vicinity of 700 today they
diagnosed her with infantile spasms with
hips arrhythmia I’m almost immediately
and put her on three different
medications as well as started the
ketogenic diet she did not progress at
all she was not growing she was not
gaining weight the doctors had given us
a point one percent chance that she
would really do anything they kind of
felt like that they had done everything
they could do there was no diagnosis
therefore there was no prognosis we just
felt like our hands were kind of tied
you don’t want to believe what they’re
telling you and so you try and find
alternative solutions and thankfully we
found one
we ended up you know leaving you know a
quarter of our possessions behind
selling our business and we made the
journey to Colorado our neurologist told
us that she can’t prescribe it she knows
nothing about it it hasn’t been studied
but that she recommend we do what we
need to in order to help Milly you don’t
that stuff cleaned out yeah we started
Charlotte’s Web right around her
birthday and within the first 15 minutes
of her first dose she was wide awake and
looking around and I mean I was just
crying I couldn’t believe it
yeah probably within the first 90 days
we noticed about a 75 to 90% reduction
in seizures I mean we’ve had extended
periods of time that we’ve had no
seizure activity and when I say extended
periods of time nine days 14 days we’ve
had times where we backed off and not
giving her doses of CBD for upwards of a
week maybe a little more and then we
have times when we will have to increase
their CBD it’s not as complicated now
that once was we first got here was a
little scary it was a little difficult
trying to figure it all out it really
has been a lot of trial and error it was
all parental experience asking other
parents you know hey when you see this
seizure what do you do it gets
frustrating and then you find the sweet
spot and you think yes we did it
anything really consider off and sort of
make it throw off the whole balance it’s
kind of a two steps forward one step
back
we have some seizure activity that are a
bit more violent that are more painful I
think the most difficult part is there’s
nothing you can do about it and
basically just have to wait it out there
are days that I don’t know that I feel
like it’s hard for me to know and then
there are days that I feel very elated
and very joyful then we have her
we’ve gone from a place where we didn’t
think we would have our daughter with us
very long and trying to make every
minute count
so now we feel like we have prolonged
her life that there is an opportunity
for her to grow and maybe Walt Hulk do
some of those things that you never
thought were imaginable you know I don’t
know what the future holds for us you
know it is a very real possibility that
mentally could have a seizure and never
come out of it for Millie’s future I see
a lot of beating the odds I see a lot of
improvement I think that she’s I think
she’s really gonna make the history
books
Colorado has given us an opportunity to
be parents to make decisions that we
feel are best for our children I don’t
know exactly why people are so afraid of
this but I think it is harm now that we
need to put that behind us and move on
you
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