Marijuana stops child’s severe seizures

The Story of Charlotte Figi

By most standards Matt and Paige Figi were living the American dream. They met at Colorado State University, where they shared a love of the outdoors. After getting married, the couple bought a house and planned to travel the world. They did travel, but their plans changed when their first child was born in 2004.

Max was 2 when they decided to have another child. The couple got the surprise of their lives when an ultrasound revealed not one but two babies. Charlotte and Chase were born October 18, 2006. “They were born at 40 weeks. … Charlotte weighed 7 pounds, 12 ounces,” Paige said. “They were healthy. Everything was normal.”

Seizures and hospital stays begin

The twins were 3 months old when the Figis’ lives changed forever. Charlotte had just had a bath, and Matt was putting on her diaper. “She was laying on her back on the floor,” he said, “and her eyes just started flickering.” The seizure lasted about 30 minutes. Her parents rushed her to the hospital. “They weren’t calling it epilepsy,” Paige said. “We just thought it was one random seizure. They did a million-dollar work-up — the MRI, EEG, spinal tap — they did the whole work-up and found nothing. And sent us home.”

A week later, Charlotte had another seizure. This one was longer, and it was only the beginning. Over the next few months, Charlotte — affectionately called Charlie — had frequent seizures lasting two to four hours, and she was hospitalized repeatedly. Doctors were stumped. Her blood tests were normal. Her scans were all normal.

They said it’s probably going to go away. It is unusual in that it’s so severe, but it’s probably something she’ll grow out of. – Paige Figi

 

But she didn’t grow out of it. The seizures continued. The hospital stays got longer. One of the doctors treating Charlotte thought there were three possible diagnoses.

The worse-case scenario? Dravet Syndrome, also known as myoclonic epilepsy of infancy or SMEI.

Dravet Syndrome is a rare, severe form of intractable epilepsy. Intractable means the seizures are not controlled by medication. The first seizures with Dravet Syndrome usually start before the age of 1. In the second year, other seizures take hold: myoclonus, or involuntary, muscle spasms and status epilepticus, seizures that last more than 30 minutes or come in clusters, one after the other.

At that time, the Figis said, Charlotte was still developing normally, talking and walking the same day as her twin. But the seizures continued to get worse. The medications were also taking a toll. She was on seven drugs — some of them heavy-duty, addictive ones such as barbiturates and benzodiazepines. They’d work for a while, but the seizures always came back with a vengeance.

“At 2, she really started to decline cognitively,” Paige said. “Whether it was the medicines or the seizures, it was happening, it was obvious. And she was slipping away.” When Charlotte was 2½, the Figis decided to take her to Children’s Hospital Colorado. A neurologist tested her for the SCN1A gene mutation, which is common in 80% of Dravet Syndrome cases. After two months, the test came back positive. “I remember to this day it was a relief,” Paige said. “Even though it was the worst-case scenario, I felt relief just to know.”

Matt, a Green Beret, decided to leave the military. “Every mission, every training I was going to do I was called home because she was in the pediatric ICU again or in the hospital again.” They were quickly running out of options. They considered a drug from France. Doctors suggested an experimental anti-seizure drug being used on dogs.

Paige took her daughter to Chicago to see a Dravet specialist, who put the child on a ketogenic diet frequently used to treat epilepsy that’s high in fat and low in carbohydrates. The special diet forces the body to make extra ketones, natural chemicals that suppress seizures. It’s mainly recommended for epileptic patients who don’t respond to treatment.

The diet helped control Charlotte’s seizures but had a lot of side effects. She suffered from bone loss. Her immune system plummeted. And new behavioral problems started popping up.

At one point she was outside eating pine cones and stuff, all kinds of different things. As a parent you have to say, let’s take a step back and look at this. Is this truly beneficial treatment because of these other things? – “Matt Figi

 

Two years into the diet, the seizures came back.

The end of the rope

 

In November 2000, Colorado voters approved Amendment 20, which required the state to set up a medical marijuana registry program. There are eight medical conditions for which patients can use cannabis — cancer, glaucoma, HIV/AIDS, muscle spasms, seizures, severe pain, severe nausea and cachexia or dramatic weight loss and muscle atrophy. The average patient in the program is 42 years old. There are 39 patients under the age of 18.

 Paige had consistently voted against marijuana use. That was before Dravet Syndrome entered their lives.  Matt, now a military contractor spending six months a year overseas, used his spare time scouring the Internet looking for anything that would help his little girl.

He found a video online of a California boy whose Dravet was being successfully treated with cannabis. The strain was low in tetrahydrocannabinol, or THC, the compound in marijuana that’s psychoactive. It was also high in cannabidiol, or CBD, which has medicinal properties but no psychoactivity. Scientists think the CBD quiets the excessive electrical and chemical activity in the brain that causes seizures. It had worked in this boy; his parents saw a major reduction in the boy’s seizures.

By then Charlotte had lost the ability to walk, talk and eat. She was having 300 grand mal seizures a week. Her heart had stopped a number of times. When it happened at home, Paige did cardiopulmonary resuscitation until an ambulance arrived. When it happened in the hospital, where they’d already signed a do-not-resuscitate order, they said their goodbyes. Doctors had even suggested putting Charlotte in a medically induced coma to give her small, battered body a rest.

She was 5 when the Figis learned there was nothing more the hospital could do. That’s when Paige decided to try medical marijuana. But finding two doctors to sign off on a medical marijuana card for Charlotte was no easy feat. She was the youngest patient in the state ever to apply.

Scientists don’t fully understand the long-term effects early marijuana use may have on children. Studies that show negative effects, such as diminished lung function or increased risk of a heart attack, are primarily done on adult marijuana smokers. But Charlotte wouldn’t be smoking the stuff.

Childhood is also a delicate time in brain development. Preliminary research shows that early onset marijuana smokers are slower at tasks, have lower IQs later in life, have a higher risk of stroke and increased incidence of psychotic disorders, leaving some scientists concerned.

“Everyone said no, no, no, no, no, and I kept calling and calling,” Paige said.  She finally reached Dr. Margaret Gedde, who agree to meet with the family.  “(Charlotte’s) been close to death so many times, she’s had so much brain damage from seizure activity and likely the pharmaceutical medication,” Gedde said. “When you put the potential risks of the cannabis in context like that, it’s a very easy decision.”

The second doctor to sign on was Alan Shackelford, a Harvard-trained physician who had a number of medical marijuana patients in his care. He wasn’t familiar with Dravet and because of Charlotte’s age had serious reservations.  “(But) they had exhausted all of her treatment options,” Shackelford said. “There really weren’t any steps they could take beyond what they had done. Everything had been tried — except cannabis.”

Paige found a Denver dispensary that had a small amount of a type of marijuana called R4, said to be low in THC and high in CBD. She paid about $800 for 2 ounces — all that was available — and had a friend extract the oil. She had the oil tested at a lab and started Charlotte out on a small dose. “We were pioneering the whole thing; we were guinea pigging Charlotte,” Paige said. “This is a federally illegal substance. I was terrified to be honest with you.”

But the results were stunning. “When she didn’t have those three, four seizures that first hour, that was the first sign,” Paige recalled. “And I thought well, ‘Let’s go another hour, this has got to be a fluke.’ ” The seizures stopped for another hour. And for the following seven days. Paige said she couldn’t believe it. Neither could Matt. But their supply was running out.

Charlotte’s Web

 Paige soon heard about the Stanley brothers, one of the state’s largest marijuana growers and dispensary owners. These six brothers were crossbreeding a strain of marijuana also high in CBD and low in THC, but they didn’t know what to do with it. No one wanted it; they couldn’t sell it. Still, even they had reservations when they heard about Charlotte’s age. But once they met her, they were on board.

The biggest misconception about treating a child like little Charlotte is most people think that we’re getting her high, most people think she’s getting stoned, Josh Stanley said, stressing his plant’s low THC levels. Charlotte is the most precious little girl in the world to me. I will do anything for her. – Josh Stanley

 

The brothers started the Realm of Caring Foundation, a nonprofit organization that provides cannabis to adults and children suffering from a host of diseases, including epilepsy, cancer, multiple sclerosis and Parkinson’s, who cannot afford this treatment.  People have called them the Robin Hoods of marijuana. Josh Stanley said it’s their calling. They use the money they make from medical marijuana patients and get donations from sponsors who believe in their cause. They only ask patients such as the Figis to donate what they can. “We give (cannabis) away for next to free,” Stanley said. “The state won’t allow us to actually give it away, so we give it away for pennies really.”

Charlotte gets a dose of the cannabis oil twice a day in her food. Gedde found three to four milligrams of oil per pound of the girl’s body weight stopped the seizures.

Today, Charlotte, 6, is thriving. Her seizures only happen two to three times per month, almost solely in her sleep. Not only is she walking, she can ride her bicycle. She feeds herself and is talking more and more each day. “I literally see Charlotte’s brain making connections that haven’t been made in years,” Matt said. “My thought now is, why were we the ones that had to go out and find this cure? This natural cure? How come a doctor didn’t know about this? How come they didn’t make me aware of this?”

The marijuana strain Charlotte and now 41 other patients use to ease painful symptoms of diseases such as epilepsy and cancer has been named after the little girl who is getting her life back one day at a time.  It’s called Charlotte’s Web.

“I didn’t hear her laugh for six months,” Paige said. “I didn’t hear her voice at all, just her crying. I can’t imagine that I would be watching her making these gains that she’s making, doing the things that she’s doing (without the medical marijuana). I don’t take it for granted. Every day is a blessing.” Matt added, “I want to scream it from the rooftops. I want other people, other parents, to know that this is a viable option.”

For the original article by Saundra Young for CNN

 

Sorgente: Marijuana stops child’s severe seizures

New Study: CBD Can Be Used to Treat Dravet Epilepsy

A recent study published in The New England Journal of Medicine confirmed what many marijuana advocates have for years, marijuana can reduce the amount of seizures had by epileptic children. The study’s lead investigator, Dr. Orrin Devinsky, stated, “This study clearly establishes cannabidiol as an effective anti-seizure drug for this disorder and this age group.”

THE STUDY’S FINDINGS

The double-blind, placebo-controlled study tested 120 children and teenagers who suffer from Dravet syndrome. Dravet syndrome is a form of epilepsy that causes many daily seizures and kills 20 percent of patients before they reach the age of 20. During the 14 week study, the average number of seizures per month for the group prescribed cannabidiol (CBD) decreased from 12.4 to 5.9 while the placebo group’s average seizures decreased from 14.9 to 14.1.

THE RESULTS MUST BE TAKEN WITH CAUTION

The news that there could be some relief for Dravet sufferers is huge. And while the news is exciting, Dr. Devinsky cautions, “This is not a panacea,” in reference to the study’s findings. The study proves marijuana’s effectiveness in treating Dravet syndrome but not for all forms of epilepsy. There were however, some side effects, including: diarrhea, vomiting, fatigue, pyrexia, somnolence, and abnormal results on liver-function tests, likely due to the high volume of CBD given to each of the studies participants. The study’s participants were each given 20 mg per kilogram of body weight per day or placebo which is a large dose of CBD for anyone, let alone a child. For proof of general effectiveness for seizures, more studies need to be conducted, though the evidence is exciting.

MORE RESEARCH MUST BE DONE

Studying the effects of marijuana as a medicine is important to deeply understanding exactly what the benefits can be. Yet due to the lingering schedule 1 classification by the DEA as well as the recently re-upped “war on drugs,” marijuana research is all but prohibited by the federal government. Until the federal government’s antiquated opinions on marijuana and its possible medicinal qualities, studies like these will not be possible in the United States. While there were side effects, including: diarrhea, vomiting, fatigue, pyrexia, somnolence, and abnormal results on liver-function tests, likely due to the high volume of CBD given to each of the studies participants.

Sorgente: New Study: CBD Can Be Used to Treat Dravet Epilepsy

Due news dal recente meeting #CMSC17: stigmatizzazione sociale e stato mentale

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Buongiorno cari lettori e buon inizio settimana,
oggi vi parlerò di due notizie che sono state discusse al 2017 Annual Meeting of the Consortium of Multiple Sclerosis Centers (CMSC),  (meeting internazionale del Consorzio dei centri SM), tenutosi a New Orleans dal 24 al 27 Maggio.

Un recente studio afferma che la stigmatizzazione sociale aumenta la depressione nei pazienti SM

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Le persone con sclerosi multipla che si sentono stigmatizzate a causa della loro condizione fisica hanno maggiori probabilità di avere depressione; questo è quanto è emerso da una ricerca presentata presso il meeting internazionale del Consorzio dei centri SM.
Il team di ricerca della Pennsylvania State University ha dichiarato che l’impatto dello stigma può essere facilitato da un sostegno sociale, un maggiore senso di appartenenza e un senso di indipendenza.

Il loro studio è stato basato su informazioni del sondaggio semestrale del Comitato di ricerca nordamericano sulla sclerosi multipla

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Largest, most rigorous study to date confirms CBD oil helps some kids with epilepsy

A medicine made from marijuana, without the stuff that gives a high, cut seizures in kids with a severe form of epilepsy in a study that strengthens the case for more research into pot’s possible health benefits.

“This is the first solid, rigorously obtained scientific data” that a marijuana compound is safe and effective for this problem, said one study leader, Dr. Orrin Devinsky of NYU Langone Medical Center.

He said research into promising medical uses has been hampered by requiring scientists to get special licenses, plus legal constraints and false notions of how risky marijuana is.

“Opiates kill over 30,000 Americans a year, alcohol kills over 80,000 a year. And marijuana, as best we know, probably kills less than 50 people a year,” Devinsky said.

The study was published Wednesday by the New England Journal of Medicine.

Sorgente: Largest, most rigorous study to date confirms CBD oil helps some kids with epilepsy

Primo caso di PML riscontrato in un paziente trattato con Ocrevus che in precedenza aveva utilizzato Tysabri

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Cari lettori,
ecco la prima vera notizia allarmante su Ocrevus che ha immediatamente attirato la mia attenzione. Un paziente affetto da sclerosi multipla trattato in Germania con Ocrevus (ocrelizumab) ha sviluppato la leucoencefalopatia multifocaleprogressiva (PML).
Tuttavia,non è ancora chiaro se il trattamento, recentemente approvato, ora in commercio negli Stati Uniti e realizzato da Genentech / Roche, è l’unica causa.

Il paziente ha preso l’ultima dose di un corso triennale di Tysabri (Natalizumab) nel mese di febbraio. Tysabri èun farmaco che notoriamentepuò determinare l’incidenzadi PML – una grave infezione cerebrale causata dal virus di John Cunningham (JC), che lascia la maggioranza dei pazienti gravemente disabili o addirittura puòcausare la loro morte.

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Nel mese diaprile, il paziente ha ricevuto una dose di Ocrevus come parte di un programma tedesco di supporto medico. Secondo Anthony Vaughn, leader internazionale delle comunicazioni sulla sclerosi multipla, la compagnia…

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Nigeria: Of drug war and marijuana’s business value

As the youth grow up, they are warned about the “dangers” of marijuana and other substances. The supposed danger, as echoed by many, is that marijuana makes people become unkempt, irresponsible, lazy and ultimately, running-on-the-streets-naked (that is, madness). Some religious preachers go as far as to say that marijuana users are hell-bound. Since the 1950s, thousands have been jailed; countless properties have been confiscated by the government, and taxpayers’ money has been wasted on the war on drugs in Nigeria, through the National Drug Law Enforcement Agency (NDLEA).

Sorgente: Nigeria: Of drug war and marijuana’s business value

New Study Finds Cannabis May Help Preserve Brain Function As We Age

As we get older, the brain ages. As the brain ages, cognitive ability decreases. Short-term memory, learning new things, or devoting attention to several things at the same time becomes more difficult. Researchers have long been looking for ways to slow down or even reverse this process. Scientists at the University of Bonn and The Hebrew University of Jerusalem (Israel) have now achieved this in mice.

A new study published in Nature Medicine reports that low-doses of delta-9-tetrahydrocannabinol (THC), an active ingredient of cannabis, given to mice helped to restore and even reverse some effects of age-related decline in cognitive performance, as well as enhanced expression of synaptic marker proteins, and increased hippocampal spine density. These results are very promising for treatment and prevention of dementia and other neurodegenerative diseases.
The Endocannabinoid System and Aging
There is substantial evidence suggesting that the endocannabinoid system (ECS) is part of a system that modulates the physiological processes underlying aging. The activity of the ECS declines during aging, as CB1 receptor expression and coupling to G proteins are reduced in the tissues of the aging brain.


CB1 receptors are proteins to which substances dock and thus trigger a signal chain. Because THC accumulates at the receptor, CB1 is also the reason for the euphoric and “”high” effects of THC found in cannabis and high-THC cannabis products. As we age, the quantity of the cannabinoids naturally formed in the brain reduces, leading to rapid aging in the brain.
The Zimmer, et al., Study
To test the effects of cannabis on the brain, Andreas Zimmer, director of the Institute of Molecular Psychiatry at the University of Bonn, worked with a team of researchers to study the effects of THC on mice.
mouseResearchers chose mice because there are some really important similarities between humans and mice. Because they are both mammals, the hippocampus and other brain parts involved with learning and memory function the same. Humans and mice also have the same proteins and biological systems, and a similar endocannabinoid system. However, mice have a relatively short life expectancy and display pronounced cognitive deficiencies even at 12-mos. old.
Mice were grouped by age (2 months, 12 months, and 18 months), along with a control group that was left untreated. Each group was tested for cognitive capacities before and after the treatment cycle. The team put the mice through several behavioral and ability tests, like the Morris water maze, to test their capacity to learn and adapt to changes in their environment, as well as their ability to remember and recognize other mice.
All of the mice, except the control group, were administered low doses of THC over a period of four weeks, via an implant.
“The treatment completely reversed the loss of performance in the old animals. It looked as though the THC treatment turned back the molecular clock.” – Prof. Andreas Zimmer, Institute of Molecular Psychiatry
To discover precisely what effect the THC treatment had on the mice, the researchers examined the brain tissue and gene activity of the treated mice. In the older mice, they found that the molecular signature no longer corresponded to that of an old animal, but was instead very similar to that of its younger counterpart.
The research team found that THC reversed the age-related cognitive decline in the 12-mo. and 18-mo. old mice. This behavioral effect was accompanied by increased synaptic marker proteins and increased hippocampal spine density. The number of links between the nerve cells in the brain also increased again, which is an important prerequisite for learning ability. In fact, the THC treatment worked so well that the performance of the 12-mo. old THC-treated mice closely resembled that of the untreated 2 mo. old mice in the control group.
These findings suggest that restoration of CB1 signaling in older people could be an effective strategy to treat ailments of the aging, such as dementia.
THC Affects the Brain Differently Depending on Maturity Level
The Zimmer et al. study made an interestingly discovery, however. The younger mice that were treated with THC performed on par with the older untreated mice. Deficiencies or an overabundance of cannabinoids can cause cognitive processing difficulties. Therefore, the THC consumed by the younger mice made it harder for them to learn and remember, but that same amount of THC consumed by the older mice helped them restore a declining internal balance of brain chemicals.
Researcher Onder Albayram was interviewed by Inverse Science, and asked what accounts for these behavioral changes. Albayram replied, “The young brain has lots of endocannabinoids, and an old brain has significantly less. That’s why when you give THC to a young brain, which can access lots of endocannabinoids, this confuses the brain. But when you give THC to old brains, they have less endocannabinoid binding affinity, so the brain experiences a plasticity change to adapt to high THC.”
The control group of mice who were only given a placebo displayed natural age-dependent learning and memory losses.

https://www.medicaljane.com/2017/05/15/new-study-finds-cannabis-may-help-preserve-brain-function-as-we-age/

News recenti che hanno catturato la mia attenzione: Cannabis Gum, Ocrevus, diagnosi errate e altre storie

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Cari lettori,
spesso è difficile per me aggiornarvi su proprio tutte le notizie che vedo online sulle ricerche in atto la momento, ma oggi vediamo insieme una lista di alcune notizie relative alla Sclerosi Multipla, che sono apparse suMS News Todaydurante la settimana scorsa e che hanno catturato in qualche modo la mia attenzione.

Axim firma un contratto per avanzare le sperimentazioni cliniche di una gomma a base di Cannabis (MedChew Rx) per curare il dolore nella SM

Gli studi sono focalizzati su una gomma da masticare a base di cannabis per curare il dolore nella sclerosi multipla. La gomma contiene CBD e THC ed è in fase di sperimentazione negli Stati Uniti e in Europa. Secondo un funzionario della Axim, “lo sviluppo della gomma MedChew RX sarà formulato con cura per assicurare che i farmaci siano preferibilmente assorbiti oralmente entro un determinato lasso di tempo in modo…

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Lo Yeti cercava giustizia ma trovò la legge

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Lo Yeti è uno dei pochissimi locali romani che io conosca ad avere il bagno a norma di legge per chi non è “normodotato”, come si dice. Non sarà veramente una rarità mi auguro, perché io non ho visitato tutti i locali romani, ma qualche centinaio ormai credo di sì e sono quasi sicuro di non averne quasi mai incontrati, di bagni a norma di legge, nella capitale italiana (l’unico altro bagno a norma che mi viene in mente è quello di Tuba, sempre al  quartiere Pigneto).
Ci penso sempre, mentre mi infilo in anfratti angusti e spesso maleodoranti, alle poche leggi giuste come sempre disattese, e alle tante sbagliate che vengono usate contro le persone ogni giorno.
La storia dello Yeti di questi giorni parla più o meno di questo, anzi di molto peggio, e per questo voglio condividere una lettera scritta di getto dalla mia amica Francesca, scrittrice…

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