Parents Say Medical Cannabis is “Miracle Drug” for Children

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Families Using Cannabis Oil For Children_20160430185504

The nation’s first medical marijuana law was passed right here in California in 1996. The country has come a long way since then. In some states, even recreational use is now legal. 

All of these laws pertain to adults. But what about children? 
 
According to the federal government, marijuana is a schedule one drug in the same category as Heroin and LSD. The DEA describes a schedule one drug as the most dangerous with high potential for abuse. It has no accepted medical use, but we were contacted by the parents of three local children who say their kids can prove that wrong. 
 
It’s bedtime at the Ajluni house where brushing your teeth and goodnight kisses are a must. The nighttime ritual starts with family dinner and some outside skateboarding, and wraps up with a nightly dose of cannabis. 
 
Yes, that’s right. Every night before bed, these two little boys sip down a strain of marijuana. 
 
“It tastes pretty gross, but it’s good for you,” Joey said. 
 
They don’t smoke it. They take it along with their prescriptions because this too, is from a doctor. 
 
“There are different kinds of cannabis oil. They’re in pills and they’re in liquids. And there’s different kinds of pills and liquids,” Joey said. 
 
Parents Shannan and David say cannabis oil has changed Joey’s life, but it has saved his brother Olly’s life. 
 
“He was on four different seizure medications at a time and he was average 4 seizures a day. Then comes the cannabis. And it stops, like that,” David said. 
 
Olly was diagnosed with an incurable cancer, Hystiocytosis, at 18 months after his mother, Shannan, discovered a grapefruit sized tumor on his shoulder In and out of hospitals, Olly underwent chemotherapy.
 
“I’ve been in the hospital for 2 years!” Olly said.
 
The chemo finally put Olly’s cancer to sleep, but the five year old was left with some battle scars, diabetes insipidus and epilepsy. 
 
“I hate seizures. One time I even had a crazy one,” Olly said. 
 
That crazy one put Olly in the hospital for five days. That’s when Shannan had enough and told her doctor she wanted to put him on cannabis. 
 
“I called 130 doctors from San Diego to Oakland, trying to find somebody to write a recommendation for my son and they all told me no,” Shannan said. 
 
Eventually, Shannan got medical marijuana card for her son, finally finding a doctor who would help her out.
 
She gave Olly his first dose of cannabis oil on a colored marshmallow on August 18, 2014. 
 
“I held onto it and I cried, just please God, let this work because I want my baby,” Shannan said. 
 
Then she watched him around the clock, waiting for a seizure to come. 
 
“At 24 hours without a seizure, I was getting kind of hopeful, and at a week without a seizure, I couldn’t look at him without crying,” Shannan said. 
 
Olly has now been seizure free for almost two years. He was also on several different types of seizure medications. Those too are now gone.
 
“I don’t have anymore seizures, and also I used to never take and now I take it every single night,” Olly said. 
 
But now he’s not taking the oil alone. His brother, seven year old Joey is on the autism spectrum, and has OCD and ADHD, along with Tourettes.
 
“You’ve seen how active he can be and that’s not even half of how he was,” Shannan said. 
 
Shannan decided to try cannabis oil on him about a year ago, but Joey’s dad, David wasn’t sure. 
 
“When does it stop being were doing something good for our son to, oh hey everybody should have cannabis, it’s great stuff man. You know what i mean?” David said.
 
Eventually, Shannan got her way, and the effects are clear.
 
“With me it helps me not to be wild, cause I’m really wild,” Joey said. 
 
“It’s like he can take a deep breath, and he can breathe and he can think without thinking in circles,” Shannan said. 
 
It’s a thick, gooey substance and each boy gets an amount smaller than a grain of rice every night.
 
“I mean it tastes disgusting. I mean horrible but only, I love it because well it help me not have seizures,” Olly said. 
 
Beyond the Ajluni home, cannabis oil is being administered in other Central Valley families.
 
In Earlimart, the Mendoza family has found their own version of success with the drug. Five-year-old Vivianna Mendoza loves Steve Harvey. She can’t tell you she loves him, but you’ll know. 
 
Vivianna takes cannabis oil too, but hers is in liquid form and goes in through her feeding tube. Vivianna suffered severe brain damage when she was born. This video taken when she was just two shows how unresponsive she was before the oil.
 
“She’d stare off into the distance a lot, I feel like she was here, but she wasn’t really here all the time,” Vivianna’s mother, Rebecca said. 
 
She’s been on the oil for over a year. And now, she responds, she interacts, she plays with an ipad, she’s even said a word, and blown a kiss. 
 
“I didn’t think that I would see her like this,” Rebecca said. 
 
A family who was told their daughter wouldn’t make it through her first night is now seeing a new life in her eyes. 
 
“I’m just elated that she’s able to let us know how she feels and that she’s here and she’s present and she’s not just locked up like they thought she would be,” Rebecca said. 
 
Whether this controversial drug is miracle medicine for anyone, let alone children, is still up for debate. 
 
This doctor, agreed to speak with us about his experience. He asked to remain anonymous due to the controversy surrounding this alternative treatment, but tells us he has worked with dozens of children taking medical cannabis, including the three you’ve just met. He says it’s a treatment that is revolutionary. 
 
“In over 20 years, it’s one of the best things I’ve seen as far as having some extremely positive effects with medically fragile special needs kids,” the doctor said. 
 
He says the only problem is the legality. He says all of his patients are taking the oil legally, but many children are not. 
 
“Most parents are going to do whatever they need to do for their child,” the doctor said.  
 
He says some parents have an adult get the medical marijuana card, then give the marijuana to the child. And the product may not be the best for the kid. 
 
“It’s not something that’s FDA regulated, or when you go to get a medication at the pharmacy, we know what’s in it because it’s tested,” the doctor said. 
 
Because not every plant is the same, the environment, pesticides, weather all leave different traces on the same drug, which makes a different medicine every time.
 
That’s where the cannabis oil comes into play. The oil comes from California, but the technology to make it comes from Colorado. It was developed by two chemists, Steve Baugh and Michael Turcotte.
 
They have developed a tool that takes out some of the guesswork. 
 
“After it’s formulated and compounded, then we can check the final product to see if we hit the target so that the same thing is being delivered repeatedly,” Turcotte said. 
 
It’s called Cannaprint. It’s one of a kind and fairly new. They say this is what makes the oils these kids are taking different than what happens when an individual smokes marijuana. 
 
“He doesn’t know if he smoked the same thing twice in a year,” Turcotte said. 
 
Even medical experts who support the use of medical cannabis say they are not sure how or why it helps. 
 
“The ability to do any true research on it is limited to the few studies that the universities center. So we don’t understand how is works or what it works for,” the doctor said. 
 
Only that it has active ingredients that our brains respond to. 
 
“We know that receptors exist, so there’s something in our brain that recognizes that chemical, but then what happens after that, we’re not really sure,” the doctor said. 
 
The main chemicals are THC and CBD, but dozens of compounds are stirred in.
 
It can be a pricey treatment. A prescription for each child costs almost $200 dollars a month. There’s no help from insurance. 
 
And because it’s a schedule one drug and not all medical professionals support it’s use, the treatment is not allowed in hospitals. So if a child has to be hospitalized, they will have to postpone treatment until they are out, but some parents don’t listen. 
 
“There are some parents who make the decision unilaterally to apply it,” Tony Yamamoto with Valley Children’s Hospital said. 
 
Yamamoto says that’s when the hospital has to take action. 
 
“Essentially they’re illegally administering a substance to their child so it puts in a position of whether we need to make a child abuse report,” Yamamoto said. 
 
Something Yamamoto says they have done before. 
 
But the landscape for medical marijuana is constantly changing. Up in the capitol, the state is working on the creation of the Bureau of Medical Marijuana Regulation. 
 
“The bureau is responsible for licensing, and developing regulations for, dispensaries, distributors, and transporters<” Spokesperson Veronica Harms said. 
 
Harms says they will be ready to start accepting license applications by 2018. 
 
“We are currently holding informational sessions throughout the state to collect initial feedback from the public regarding implementation,” Harms said. 
 
What we don’t know is what’s next for the drug or if it will ever be easy for children with debilitation conditions to access it.
 
What we do know is there are scientists who say it works.. 
 
“We have a lot of children getting better by a lot of different products, made by a lot of different people,” Baugh said. 
 
Doctors who say it cures.
 
“I’ve seen quite a few kids that have has positive effects from it. Some of those kids have no seizures at all, some are weaning off their seizure medication,” the doctor said. 
 
And parents who say it’s a miracle. 
 
“My 5 year old is probably the most prolific cannabis user I know of, but he’s also alive from it,” Shannan said. 
 
There are several different links people can access to find more information about the use of cannabis oil on children:
 
https://www.aap.org/en-us/Pages/Default.aspx
 
http://cannakids.org/
 
Video on CannaPrint: https://youtu.be/Bnz3IiN529c
 
http://www.unitedpatientsgroup.com/blog/2014/03/24/cannabis-extract-medicine-successfully-treating-children-for-cancer-and-epilepsy-by-justin-kander/
 
You can also email Shannan Ajluni about her experience at shannanajluni@gmail.com.
 
Obviously, the treatments have taken a huge financial toll on these families. If you would like to help the Ajluni family, you can do so by clicking here: https://www.gofundme.com/Saving-Olly
 

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