Jacob Redmond
Well-Known Member
Brandy Johnson packed a U-Haul, took her son Tres, and her father, and drove 22 hours one way to get to Colorado for what she described as an "awful" and "terrible" experience. But, she said she would do it again in a heartbeat.
The reason? She was able to get her son, Tres, the medicine he needed. And, despite the struggles of getting to Colorado, there was one big silver lining.
"It worked," she said. "It was almost instantaneous."
Tres suffers from a condition named Diprosopus, which is commonly referred to as cranial duplication.
Of only 35 cases in the world, Tres is the only one with his particular condition. According to Johnson, Tres has no duplication on either side of his brain. As a result, Tres suffers from debilitating seizures with an average of almost 300 a day. Sometimes he has more.
"When the barometric pressure changes, that affects him," Johnson said. "That and different lunar phases seem to make him seize more."
Since none of the prescribed medications were working for Tres, and there were no more options, Johnson decided to establish a residence in Colorado for a chance at getting him cannabis oil. But, she said it's a shame she had to drive so far to do it.
Missouri Governor Jay Nixon signed a bill in July 2014, which will permit marijuana to be grown legally in the state of Missouri for the first time since cannabis prohibition began, and which will allow cannabidiol (CBD) to be extracted from those plants and provided to patients with intractable epilepsy.
One year later, though, and CBD is still not available in Missouri. Among the reasons why are the fact that the state only just approved two manufacturers of CBD oil, and CBD is not allowed from anywhere outside the state.
"It would be great if I could just go get the CBD oil and bring it back for my son," Johnson said. "But the state won't allow CBD unless it's been produced in Missouri."
Another issue stems from the fact that many doctors are reluctant to authorize CBD oil as treatment. Doctors are licensed by the DEA, and many physicians don't want to risk their practice because cannabis is still listed as a schedule one narcotic. Schedule one means there is no medicinal value.
Johnson opposes that view.
"It worked almost instantly," she said. "I had my doubts about whether or not it would work, but it did. Tres went from 300 seizures a day to having about 60 just in that first day of treatment. And he got better with each passing day."
Since starting the treatment, Johnson said she's noticed his cognitive functioning has improved, as well as the fact that he has started gaining some weight.
"This works," Johnson said, as she wiped a tear from her eye. "This is what I've been looking for. This is medicine that improves his quality of life and won't put him into renal failure."
Johnson noted that Missouri is her home, and she doesn't want to have to go out of state to take care of her son.
"I'm hopeful that everything will eventually work here," Johnson said. "But I'm not that optimistic."
In order for a Missouri patient to qualify for CBD, a state application must be filled out. Upon approval of the application, a physician must sign off on the treatment.
"When I spoke to my son's doctors in St. Louis, they didn't want to even discuss CBD," Johnson said. "It's just so frustrating. It seems criminal to me, to withhold a treatment that I know for a fact works for my son."
Johnson said that since she has educated herself about CBD and its benefits, it has become more difficult for her to see the struggles other parents experience.
"I know one lady who is hoping against hope that her child can get into a drug trial, because nothing else has worked," Johnson said. "And it's sad, because she has no way of knowing if her child will even get the experimental drug. She might get a placebo. And the drug trial is for a synthetic CBD. Why go through all of that when the real thing obviously works so well?"
Johnson said she is convinced that the biggest problem is a lack of awareness.
"So many people don't know much of anything about this," Johnson explained. "I had to educate myself, and I have found out so much. It's just that so many people have these notions and think they know about it, and they're usually going on bad information."
When Johnson went to Colorado, it took thousands of dollars. She had to deal with a corrupt landlord, an apartment with no lights, and an entire day in a vehicle just to get there.
"It was horrible," Johnson said. "I hated it. I hate having to go out there because this is my home. But I'll go through that every single time because the CBD works, and it helps my son."
Johnson is currently saving money for her next trip to Colorado; and, while it's projected that CBD oil will be available in the state by fall, Johnson isn't holding her breath that will actually happen.
"I hope everything comes together so I will only have to go to St. Louis to get the medicine," Johnson remarked. "But, if they're saying it will be available in the fall, then it probably won't be available until next spring.
"I don't know why there's any controversy surrounding this. I know what has worked and hasn't worked for my son. This works. So, to tell me there's no value to it, or for there to be so much controversy surrounding it, is ridiculous. I'll go to Colorado as much as I have to, because this is the only thing that works."
News Moderator: Jacob Redmond 420 MAGAZINE ®
Full Article: Daily Dunklin Democrat: Local News: Bernie mom travels to the Rockies for medicine (07/18/15)
Author: Jonathon Dawe
Contact: Daily Dunklin Democrat: Contact Us
Photo Credit: Johnson Family
Website: Daily Dunklin Democrat: Newspaper serving Kennett and Dunklin County, Missouri
The reason? She was able to get her son, Tres, the medicine he needed. And, despite the struggles of getting to Colorado, there was one big silver lining.
"It worked," she said. "It was almost instantaneous."
Tres suffers from a condition named Diprosopus, which is commonly referred to as cranial duplication.
Of only 35 cases in the world, Tres is the only one with his particular condition. According to Johnson, Tres has no duplication on either side of his brain. As a result, Tres suffers from debilitating seizures with an average of almost 300 a day. Sometimes he has more.
"When the barometric pressure changes, that affects him," Johnson said. "That and different lunar phases seem to make him seize more."
Since none of the prescribed medications were working for Tres, and there were no more options, Johnson decided to establish a residence in Colorado for a chance at getting him cannabis oil. But, she said it's a shame she had to drive so far to do it.
Missouri Governor Jay Nixon signed a bill in July 2014, which will permit marijuana to be grown legally in the state of Missouri for the first time since cannabis prohibition began, and which will allow cannabidiol (CBD) to be extracted from those plants and provided to patients with intractable epilepsy.
One year later, though, and CBD is still not available in Missouri. Among the reasons why are the fact that the state only just approved two manufacturers of CBD oil, and CBD is not allowed from anywhere outside the state.
"It would be great if I could just go get the CBD oil and bring it back for my son," Johnson said. "But the state won't allow CBD unless it's been produced in Missouri."
Another issue stems from the fact that many doctors are reluctant to authorize CBD oil as treatment. Doctors are licensed by the DEA, and many physicians don't want to risk their practice because cannabis is still listed as a schedule one narcotic. Schedule one means there is no medicinal value.
Johnson opposes that view.
"It worked almost instantly," she said. "I had my doubts about whether or not it would work, but it did. Tres went from 300 seizures a day to having about 60 just in that first day of treatment. And he got better with each passing day."
Since starting the treatment, Johnson said she's noticed his cognitive functioning has improved, as well as the fact that he has started gaining some weight.
"This works," Johnson said, as she wiped a tear from her eye. "This is what I've been looking for. This is medicine that improves his quality of life and won't put him into renal failure."
Johnson noted that Missouri is her home, and she doesn't want to have to go out of state to take care of her son.
"I'm hopeful that everything will eventually work here," Johnson said. "But I'm not that optimistic."
In order for a Missouri patient to qualify for CBD, a state application must be filled out. Upon approval of the application, a physician must sign off on the treatment.
"When I spoke to my son's doctors in St. Louis, they didn't want to even discuss CBD," Johnson said. "It's just so frustrating. It seems criminal to me, to withhold a treatment that I know for a fact works for my son."
Johnson said that since she has educated herself about CBD and its benefits, it has become more difficult for her to see the struggles other parents experience.
"I know one lady who is hoping against hope that her child can get into a drug trial, because nothing else has worked," Johnson said. "And it's sad, because she has no way of knowing if her child will even get the experimental drug. She might get a placebo. And the drug trial is for a synthetic CBD. Why go through all of that when the real thing obviously works so well?"
Johnson said she is convinced that the biggest problem is a lack of awareness.
"So many people don't know much of anything about this," Johnson explained. "I had to educate myself, and I have found out so much. It's just that so many people have these notions and think they know about it, and they're usually going on bad information."
When Johnson went to Colorado, it took thousands of dollars. She had to deal with a corrupt landlord, an apartment with no lights, and an entire day in a vehicle just to get there.
"It was horrible," Johnson said. "I hated it. I hate having to go out there because this is my home. But I'll go through that every single time because the CBD works, and it helps my son."
Johnson is currently saving money for her next trip to Colorado; and, while it's projected that CBD oil will be available in the state by fall, Johnson isn't holding her breath that will actually happen.
"I hope everything comes together so I will only have to go to St. Louis to get the medicine," Johnson remarked. "But, if they're saying it will be available in the fall, then it probably won't be available until next spring.
"I don't know why there's any controversy surrounding this. I know what has worked and hasn't worked for my son. This works. So, to tell me there's no value to it, or for there to be so much controversy surrounding it, is ridiculous. I'll go to Colorado as much as I have to, because this is the only thing that works."
News Moderator: Jacob Redmond 420 MAGAZINE ®
Full Article: Daily Dunklin Democrat: Local News: Bernie mom travels to the Rockies for medicine (07/18/15)
Author: Jonathon Dawe
Contact: Daily Dunklin Democrat: Contact Us
Photo Credit: Johnson Family
Website: Daily Dunklin Democrat: Newspaper serving Kennett and Dunklin County, Missouri
