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“We’re living in lockdown every day of our lives”

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2020 is the year coronavirus changed the world as we knew it, but some families were already living through their own pandemics, Ilmarie Braun tells Sarah Sinclair.

When Covid hit the UK earlier this year, someone asked Ilmarie Braun if she was scared.

“I’ve been scared every day since Eddie got his diagnosis,” she says.

“The reality of him living with intractable epilepsy is that his condition is life limiting, we don’t know how many years we are going to get together.”

Eddie, her five-year-old son has a condition known as infantile spasms, or West syndrome, and has been having seizures since he was seven months old.

As the country went into lockdown, and people’s lives were disrupted by not being able to travel, or go to the pub, Ilmarie couldn’t help but compare it to her and her husband Alex’s realisation that their lives would never be the same again.

“We’ve been living in a type of lockdown already,” she continues.

“It’s funny when people say things like I can’t travel. That was something we went through when we realised we would never be able to take Eddie on a longhaul flight – what if he had a seizure mid-air?”

Eddie’s condition is known as ‘neurologically catastrophic’ and the quicker the seizures are brought under control the better the outcome for the child. For the next few months of his life he was treated with strong medication to try and stop them.

“Within quite a short space of time he was on a cocktail of strong drugs and he was just a zombie – either asleep, or awake and having seizures – he stopped smiling and interacting,” says Ilmarie.

“With each new drug you hope that this will be the one that works. Nobody tells you that if the first two antiepileptic drugs don’t work the likelihood of any others working is really low.”

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Brain surgery wasn’t an option as Eddie had pre-existing damage to his brain and although he took part in a clinical trial for the ketogenic diet it proved ineffective at managing his seizures.

“Unfortunately, with Eddie we never gained control no matter what we tried,” says Ilamrie.

“We were just surviving and life was pretty crap to be honest, for Eddie and for us as his family.”

When Ilmarie’s sister sent her an article she had read about medical cannabis, at first she was offended.

“I had preconceptions that cannabis is recreational and I was quite offended that anyone would think that is something we would do,” she admits.

“But actually, when you watch your baby having seizure after seizure and nothing is working, you do have to start thinking differently.”

At the time full extract cannabis, containing THC was still illegal, so they bought a CBD oil called Hayley’s Hope from America. Eddie’s pediatrician wouldn’t prescribe it, but he supported the family to wean Eddie off his other medication when his condition started to improve and kept detailed notes in his medical records.

“One by one, we slowly weaned him off everything and Eddie came back to us,” says Ilmarie

“He’s profoundly disabled physically but he’s such a happy little boy. He has got his own personality and he’s here now whereas for a long time, he was just existing.”

But Eddie’s condition is known to progress with age and he started to have other seizure types, such as tonic and myoclonic as well as the spasms. Ilmaire and Alex felt he would see more improvement on THC, and took the route other families in their situation had, with a referral to a doctor in Holland.

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“It never occurred to me that the doctor in Holland would say no,” she says.

“She said she couldn’t keep taking English kids. We were left in a position where we really didn’t know what we were going to do next.”

Around the same time another UK mum was campaigning to be allowed to bring her son’s medical cannabis prescription back from Canada. Ilmarie joined her and other parents in the fight to change the law.

“It all moved really fast, for a couple of weeks it all went crazy. I was on TV, in the papers it all felt really positive,” she remembers.

 “My local MP got me an appointment with Nick Hurd who was setting up the RESCAS panel and he assured me that it was for children exactly like Eddie.”

However, the panel refused Eddie’s case on the grounds that he had not yet tried epidiolex, despite the fact it had not yet been approved in the UK.

He started treatment with the drug around November 2018, with Ilmarie and Alex hopeful that he would soon be able to access a prescription for full extract cannabis on the NHS.

Their requests were turned down at the first hurdle.

Over a year later and Eddie now has a private prescription, which the family is able to fund thanks to generous donations from friends and family.

“The Bedrolite has been amazing for him, since he has been on it we haven’t had to call an ambulance and he hasn’t had any rescue medication,” says Ilmarie.

“The biggest thing was that he started to sleep through the night, which he had never done before. Sleep is huge for us as his parents but also for Eddie developmentally.”

Although Eddie is still having between one and three seizures an hour, Ilmarie believes it is the cannabis which is preventing them from being catastrophic.

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“Unfortunately with infantile spasms if you don’t get them under control, 30 percent of children go on to develop Lennox Gastaut syndrome,” she says.

“The cannabis is keeping him stable and safe, but he has brain damage, and he will always have seizures. Even if it’s only helping 50 percent, it’s more than anything else has ever achieved.”

As members of the End Out Pain movement, Ilmarie and Alex are continuing to fight for access to medical cannabis on the NHS. But despite it once feeling so positive she now feels that day is as far away as ever.

“It’s really demoralising now, there are blocks everywhere and it feels like it is never going to progress,” she says.

“There is so much going on in this country now and everybody is worrying about what the effects of pandemic might be on them, financially and in terms of their own health.”

She continues: “Lockdown has made fundraising hard for the parents and a lot of the families are really panicking about running out of money, everyone is really upset.

“We already know that we might not get that long with our children, to have this added emotional stress and anxiety is really unkind.”

The Government could do more, she says, to help these families.

“We don’t know what the future holds, but we know it isn’t going to be easy,” adds Ilmarie.

“We are already scared every day, if there is something out there that is helping we shouldn’t be scared about how we are going to get access to that – that is the most heartbreaking thing.”

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New studies examine effects of THC and CBD on stroke

New data suggests both positive and negative effects of cannabis in stroke patients

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A new study has shown that pre-treatment CBD may have a neuroprotective effect in stroke patients.

The study aimed to investigate the effect of CBD on oxidative stress and cell death which occurs in ischemic stroke patients.

It revealed that the cannabinoid may reduce the destructive effects of cell damage associated with stroke.

Ischemic strokes are the most common type of stroke. They occur when a blood clot blocks a flow of oxygen or blood to the brain. This takes place in arteries that have been narrowed or blocked over time by fatty deposits (plaques). The most common symptoms of a stroke include facial drooping on one side, not being able to lift your arms and slurred speech.

If this occurs, it is vital that a person be taken to the emergency room immediately.

The National Institute of Health Care and Excellence (NICE) estimate that there are around 100,000 strokes every year in the UK. It is also thought that 1.3 million people live with the effects of a stroke.

Stroke recovery and CBD results

The Study showed that CBD reduced the amount of infarction in those samples which had been given the cannabinoid. Infarction refers to the death of tissue as a result of a lack of blood supply and is commonly due to a blood vessel being obstructed or narrowed.

There were also differences in malondialdehyde level (MDA) – a common marker of oxidative stress – between the brains of the CBD group and the vehicle group.

It also revealed that CBD may help to protect tissue by preventing further damage.

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THC and stroke risk

Another recent study examined the effect that tetrahydrocannabinol (THC) could have on strokes. It found that it may increase the risk of a certain type of stroke among cannabis consumers.

According to findings, cannabis consumers who experience a stroke known as an aneurysmal subarachnoid haemorrhage (aSAH), are twice as likely to develop further complications.

An aSAH occurs when a weakened blood vessel bursts on the surface of the brain leading to bleeding between the brain and tissue that covers it. It can result in neurological disabilities, long-term slurred speech or even death. It is estimated that aSAH affects around eight people per 100,000 of the population each year, accounting for six per cent of first strokes.

The study by the American Stroke Association suggested there is twice the risk of developing delayed cerebral ischemia for cannabis consumers. The researchers analysed data from 1,000 patients who had received treatment for bleeding over a 12 year period. In the group of participants, 36 per cent developed cerebral ischemia and 50 per cent had moderate to severe disabilities.

When comparing the results of patients who tested positive for THC with those who did not, they found cannabis consumers were 2.7 times more likely to develop cerebral ischemia. They were also 2.8 times more likely to develop long-term moderate to severe physical disabilities.

However, compared to those who tested negative for THC, the cannabis group did not have larger aneurysms, higher blood pressures or worse stroke symptoms when admitted to the hospital. They did not have any higher cardiovascular risk factors than the negative group.

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Researchers are now conducting further studies in which they hope to better understand if THC can impact aneurysm formation and rupture.

Stroke: A banner advert for cannabis health news sign ups

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New study shows CBD may prevent Covid-19 infection

Researchers are calling for more trials to determine if CBD could be a preventative or early treatment for the virus.

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Covid: A covid infection

Researchers are recommending clinical trials to examine if CBD could help to prevent Covid infection after more positive findings have been published.

Researchers from the University of Chicago have reported that CBD may stop the infection of Covid-19 by blocking its ability to replicate in the lungs.

A number of cannabinoids including CBD and THC were tested along with 7-Hydroxycannabidiol (7-OH-CBD) which is thought to be produced when cannabidiol is processed by the body.

The study found that CBD showed a significant negative association with SARS-CoV-2 positive tests in a national sample of patients who were taking  high doses of CBD, prescribed for epilepsy.

As a result of their findings, researchers are calling for more clinical trials to determine whether CBD could eventually be used as a preventative or early treatment for the virus.

Covid- Covid infection

Covid and CBD study

Researchers treated human lung cells with a non-toxic dose of CBD for two hours before exposing the cells to SARS-CoV-2 and monitoring them for the virus and the viral spike protein.

They found that, above a certain threshold concentration, CBD inhibited the virus’ ability to replicate.

Further investigation found that CBD had the same effect in two other types of cells and for three variants of SARS-CoV-2 in addition to the original strain.

CBD did not affect the ability of SARS-CoV-2 to enter the cell. Instead, CBD was effective at blocking replication early in the infection cycle and six hours after the virus had already infected the cell.

Like all viruses, SARS-CoV-2 affects the host cell by hijacking its gene expression machinery to produce more copies of itself and its viral proteins. This effect can be observed by tracking virus-induced changes in cellular RNAs. High concentrations of CBD almost completely eradicated the expression of viral RNAs.

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When it came to the other cannabinoids, CBD was found to be the only potentially potent agent. There was no or limited antiviral activity noted by the similar cannabinoids including THC, CBDA, CBDV, CBC or even CBG.

Marsha Rosner, PhD, professor and senior author of the study said it was a completely unexpected result, she commented: “CBD has anti-inflammatory effects, so we thought that maybe it would stop the second phase of COVID infection involving the immune system, the so-called ‘cytokine storm.’ Surprisingly, it directly inhibited viral replication in lung cells.

She added: “We just wanted to know if CBD would affect the immune system. No one in their right mind would have ever thought that it blocked viral replication, but that’s what it did.”

The researchers do caution that this is not possible with commercially available CBD. The CBD tested was high-purity and also medical grade.

However, Rosner cautioned:  “Going to your corner bakery and buying some CBD muffins or gummy bears probably won’t do anything. The commercially available CBD powder we looked at, which was off the shelf and something you could order online, was sometimes surprisingly of high purity but also of inconsistent quality. It is also hard to get into an oral solution that can be absorbed without the special, FDA-approved formulation.”

CBD and Covid studies

This is the second study to be released showing the potential for cannabinoids in Covid management and prevention.

A study by Oregon State University has revealed that the compounds cannabigerolic acid (CBGA) and cannabidiolic acid (CBDA), may have the ability to prevent the virus that causes Covid-19 from entering human cells.

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Researchers and scientists, led by Richard van Breedan, found that a pair of cannabinoid acids bind to the SARS-CoV-2 spike protein, blocking a step in the process the virus takes for infection.

Targeting compounds that block the virus-receptor interaction has been helpful for patients with other viral infections such as HIV-1 and hepatitis.

The researchers and scientists identified the two cannabinoid acids through a screening technique, developed previously in van Breeman’s laboratory. The team also screened different botanicals such as red clover, hops, wild yam and three types of liquorice.

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Partner of Irish politician “six years seizure free” faces charges over medical cannabis use

John Montaine uses medical cannabis to manage his epilepsy – and is said to be six years seizure free.

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Irish government medical cannabis
John Montaine, is the partner of Clare Sinn Fein TD Violet Ann Wynne.

The partner of a sitting Irish TD is contesting charges of cannabis possession, saying he uses it medicinally to manage his epilepsy.

John Montaine, who is the partner of Clare Sinn Fein TD Violet Ann Wynne, was charged with the alleged illegal possession of cannabis on February 11, 2021, at his family home, the Irish Independent reported.

Mr Montaine contests the charges and his partner Deputy Wynne has previously spoken publicly about how he uses cannabis medicinally to manage his epilepsy.

Speaking after the initial court hearing in November, Deputy Wynne said in March her partner would be “six years seizure free”.

She went on to say that it has improved his quality of life “100 per cent, without a doubt”.

“There was always some kind of issue – say John having a number of fits within the one month or losing teeth or suffering with severe migraine, but since John has been using the medicinal cannabis, he has had a better quality of life,” Deputy Wynne told the Independent.

She added: “It has also freed myself up. John would have been on disability allowance and I would have had to have been his carer but since using the medicinal cannabis, he doesn’t suffer from any of those issues any longer.”

Medical cannabis is legal in Ireland, but access to a prescription is limited.

Last year Ryan Gorman, a 26-year-old man, from Dublin, who also suffers from epilepsy, became the first patient to receive a cannabis-based medicine through the Medical Cannabis Access Programme.

Despite legislation being signed off in 2019, Ireland’s Health minister Stephen Donnelly only announced funding for it in January 2021, with the programme only becoming fully operational in November.

Four cannabis-based medicines are expected to be available through the MCAP, to people living with one of three qualifying conditions. These include intractable nausea and vomiting associated with chemotherapy, severe treatment-resistant epilepsy and spasticity associated with multiple sclerosis (MS). 

Mr Montaine’s solicitor appeared in Kilrush District Court on behalf of his client this week, where his case was adjourned until 15 March.

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