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Offlinewre
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Registered: 05/06/09
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Family's desperate quest for cannabis oil - New Zealand
    #21742635 - 05/30/15 08:47 PM (8 years, 7 months ago)

Treatment for a young man in an induced coma for 54  days is being held back because of the politics and bureaucracy around medicinal marijuana, his mother says.

Nelson teen Alex Renton was hospitalised in early April after a serious seizure. He has been in an induced coma in Wellington's intensive care unit since April 8.

Alex remains in 'status epilepticus', a kind of prolonged seizure.

"The seizure has sort of stuck on. They can't get under the receptors with the medication to stop the seizures." said his mother Rose Renton said.

Despite a barrage of tests, the underlying cause remains unknown, although doctors suspect some variety of auto-immune encephalitis. Two attempts to wake him and multiple varieties of anti-epileptic medication have failed to make an impact.
Nelson teenager Alex Renton has been in a coma in Wellington Hospital since April 8.

Nelson teenager Alex Renton has been in a coma in Wellington Hospital since April 8.

"He's still in seizure, so they cannot wake him, because it's life threatening," Renton said.

Alex has spent 54 days in the induced coma now, his family marking his nineteenth birthday at his bedside. The cooking student had no known pre-existing conditions, appearing healthy except for some flu-like symptoms the week before the seizure.

With a recommendation from one of Alex's neurologists, his family are now keen to try something new - a cannabinoid oil (CBD) extracted from marijuana that international research has endorsed as a treatment for seizures. But accessing the oil, even with the support of a neurologist, has proved nearly impossible.

As Alex is legally an adult, his mother needed to gain authority over Alex's medical decisions. After 36 hours in the Wellington District Court she was granted interim guardianship.

"Luckily, I had an amazing lawyer," she said.

Neurologist Ian Rosemergy endorsed her attempt, writing in a letter that it "should at least be considered".

"We understand that this is outside the normal parameters of the management of status epilepticus however this is the family's wishes and we are happy to support them in this," he said.

Rosemergy said he could not discuss specific patients with the media. In the letter he discussed administering the oil via a nasogastric tube.

Despite the endorsement and the interim guardianship, obtaining the CBD for medical use remains a huge task. New Zealand has no clinical standard for the oil, meaning no hospital will happily administer it. Yet Renton is hopeful an appeal and the medical endorsement will make it possible.

"It's a plant. This isn't about getting stoned, it's about the anti-epileptic properties."

Even getting the oil into the country would require considerable effort.

"It's illegal to produce medicinal cannabis in New Zealand, so you have to do it overseas, but it's at a horrendous price"" said Renton. She was given a quote of US$3000 (NZ$4200) for 100ml of the oil.

"Then getting it through the governmental side and the political side will be almost impossible. [...] There's just so many individuals between, how do I make a difference to that?"

"Families shouldn't have to fight. I shouldn't have to fight to get what Alex needs."

Minister of Health spokesman Peter Abernethy clarified the Government's position.

"Policy over successive governments has been to not support the use of leaf cannabis or cannabis oil for medicinal use," he said.

"This position is supported by there being questions over the standardisation and potencies of natural cannabis, and the availability of pharmaceutical forms of cannabis as approved medicines."

One avenue remains available to Alex's family, but they are wary of taking it.

The Government allows oral treatment of a drug called Sativex, which contains cannabis extracts that include CBD. Ministerial approval is required, and the drug is expensive, but it is legal.

Renton is wary of the higher THC content in Sativex. THC is the intoxicating agent in marijuana.

"He is already so sedated with medical drugs. I don't want him to wake up in that state, but I may have no other choice," Renton said.

"This isn't just about Alex. There are thousands of people who could benefit from medicinal marijuana grown in New Zealand."

The family remains committed to obtaining CBD, setting up a Change.Org petition to pressure the Government, gaining over 400 signatures. A GiveALittle Page has allowed the Nelson community to support the seven-child Renton family as Alex's coma has continued.

www.stuff.co.nz/national/health/68986019/familys-desperate-quest-for-cannabis-oil

petition - https://www.change.org/p/new-zealand-government-let-alex-have-the-treatment-he-needs-come-out-of-an-induced-coma-it-has-already-been-51-days

SIGN THIS PETITION SO WE CAN TRY AND FAST TRACK THE PROCESS

19 year old Alex has been in an induced coma for 51 days. The ICU department in Wellington Hospital along with specialists have approved the use of CBD Cannabidiol oil. They are now in the process of trying to import this however the process may take weeks! This is a life threatening situation for a 19 year old that was completely healthy two months ago. That is still not urgent enough to speed up the process, come on NZ government, this isn't about politics or money, it's about a life!

See Alex's story through the links below.

www.givealittle.co.nz/supportforallexsjourney

https://www.facebook.com/pages/Support-for-Alexs-Journey/758372034278635?fref=ts

The family of a Nelson teenager in an induced coma for a month in Wellington Hospital have celebrated his birthday at his bedside.

Former Nayland College student Alex Renton turned 19 on Thursday  and has been in an induced coma in Wellington Hospital's intensive care unit since April 8.

The condition he was in was called status epilepticus, where he was having prolonged seizures.

His sister, Jessie Renton, said the doctors still did not know what had caused it, but were leaning towards an autoimmune disease.

Tests had been sent to the UK but came back inconclusive.

He had been taken off the sedation drugs twice while in the hospital, but Jessie said the seizures had continued.

The next step was changing his diet through his feeding tube - taking out sugar and carbohydrates.

"That has really good results with the seizures so that takes seven to 10 days to work, we are looking at next week lifting the sedation to see where he is at."

Jessie said her younger brother had always been healthy and involved in sports.

He had attended his mother's wedding on April 1 and was fit and healthy.

He fell ill on April 4 with flu-like symptoms. He then had seizures at his home in Nelson and was rushed to Nelson Hospital, then transferred to Wellington on April 8.

Jessie was in Wellington with her parents on Thursday having a birthday party for Alex.

The family was staying at Ronald McDonald House.

"We are just here for Alex, we are five weeks down the track so it's quite difficult juggling study and work."

She said the family wanted to be able to "fully commit" to being in Wellington with Alex until he woke up.

"Until he wakes up we don't actually know what the next stage will be."

The family had decorated Alex's room with balloons, a banner and streamers. They had gifted him a new laptop and shoes.

"We have taken photos and videos of the room for when he wakes up. We play his music, come in and rub his feet and hands, his room is all decorated and we watch rugby with him."

For Alex's birthday, his Facebook wall was full of messages from friends and family, which Jessie said was nice to see, and the family appreciated all the support they were getting.

Last year, Renton featured in a Nelson Mail panel on election issues for first time voters.

While passionate about rugby, he told the Mail he saw himself in the future working in research and analysis involving "fascinating" geography and history.

He said he was concerned with the environment and poverty in New Zealand.

The family is fundraising to cover travel costs to visit Alex in hospital and to cover costs as his parents and sister Jessie took time away from work to care for him.

http://www.stuff.co.nz/nelson-mail/news/68552076/mystery-illness-leaves-nelson-teen-in-coma


Edited by wre (05/31/15 11:44 AM)


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Offlinexthrx
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Registered: 04/29/09
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Re: Let Alex have the treatment he needs come out of an induced coma [Re: wre]
    #21743406 - 05/31/15 12:47 AM (8 years, 7 months ago)

Fucking agreed, thought this as soon as I read it..


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InvisibleShiithead
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Registered: 04/05/13
Posts: 9,997
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Re: Let Alex have the treatment he needs come out of an induced coma [Re: wre]
    #21743438 - 05/31/15 01:00 AM (8 years, 7 months ago)

One more cog in the machine...

Do this kid a favor and pull the plug.


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Ephesians 6:12
For we wrestle not against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this world, against spiritual wickedness in high places.
Psalm 12:6
The words of the Lord are pure words: as silver tried in a furnace of earth, purified seven times.
Hebrews 11:3
Through faith we understand that the worlds were framed by the word of God, so that things which are seen were not made of things which do appear.
Revelation 3:11
Behold, I come quickly: hold that fast which thou hast, that no man take thy crown.


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OfflineTybg
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Re: Let Alex have the treatment he needs come out of an induced coma [Re: Shiithead]
    #21744126 - 05/31/15 08:15 AM (8 years, 7 months ago)

signed


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Offlinetacodude
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Registered: 07/20/10
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Re: Let Alex have the treatment he needs come out of an induced coma [Re: Tybg]
    #21744606 - 05/31/15 12:10 PM (8 years, 7 months ago)

Too bad they don't know they can order legal CBD products online produced from hemp. Someone should tell them. Chill cbd oil is a good tested brand


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Offlinewre
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Registered: 05/06/09
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Loc: New Zealand
Last seen: 2 years, 9 months
Re: Let Alex have the treatment he needs come out of an induced coma [Re: tacodude]
    #21744649 - 05/31/15 12:24 PM (8 years, 7 months ago)

They know this but have to find a product that has had full ratios of cannabinoids tested, microbiology tests and from a licensed grower to be approved for importation by Medsafe


Edited by wre (05/31/15 12:24 PM)


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OfflineHudson
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Re: Let Alex have the treatment he needs come out of an induced coma [Re: Shiithead]
    #21756257 - 06/03/15 06:35 AM (8 years, 7 months ago)

It's a shame that events like these make me realise that politics still overrides scientific evidence, even when someone's life is in danger. I have known Alex since I was a kid, we went to the same school for most of our high school years, he is a close friend and no stranger to cannabis I might add. He is a really good guy. The consensus of CBD has been established, its anti-psychotic, anti-oxidant and neuroprotective effects are well known all that exists are regulations and legislation that prevent it being used as a medicinal option for treatment. Hell, next time I'm in Wellington I'll will pay him a visit and may give him some home made medicine, I'm sure he'd appreciate it and it may even save his life. hash is primarily decarboxylated cannibinoids, therefore neurologically active when administered orally

I hope you do the right thing and sign the petition as it personally means a lot to me.

Quote:

Shiithead said:
One more cog in the machine...

Do this kid a favor and pull the plug.



Fucking edgy.


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InvisibleOsculateOfDemise
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Registered: 06/24/05
Posts: 2,879
Re: Let Alex have the treatment he needs come out of an induced coma [Re: Hudson]
    #21757182 - 06/03/15 12:12 PM (8 years, 7 months ago)

Signed and shared through social media. I hope for the best.


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