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Patient Advocate since 1977.

‘One seizure lifted her that high off the bed — it could have killed her’

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http://www.irishexaminer.com/viewpoints/analysis/one-seizure-lifted-her-that-high-off-the-bed-it-could-have-killed-her-437848.html

By Noel Baker
Senior Reporter

Noel Baker speaks to Vera Twomey, who caught the imagination of the nation when she set out to walk from Cork to the Dáil to win the right to use cannabis oil, which has had a dramatic effect on her daughter’s health

Vera Twomey at home in Aghabullogue with her children Sophia, Elvera Mae, Ava, and Michael. Pictures: Denis Minihane

In the days before Christmas, Santa paid a visit to Coachford in mid-Cork. A few miles away at her house in Aghabullogue, Vera Twomey knew he was coming and was getting ready to race down to the village’s community centre for the visit of the man in the red suit, who was popping into the local playgroup.

With the ho ho hos clearly audible out on the street, I wondered whether Vera had brought her own letter to Santa with her.

She has had a wishlist for some time — one centred around her eldest child, Ava.

It’s a long and winding story, shot through with moments of real danger, when Ava’s life was in the balance. It is that all-pervading fear that still lingers in the background, no matter how much her condition has improved since she began taking the Everyday Plus Hemp Oil made by Charlotte’s Web and bought in a store in Dublin’s Capel St.

Sitting in her kitchen in Aghabullogue, Vera fires through the medical history at a mile a minute, conscious of the need to make it down to Coachford in time for Santa’s visit. The story begins the day Ava received her vaccinations at four months of age in the winter of 2009.

“She got her first 45-minute seizure that night at 8pm,” Vera says. “We took her into CUH by ambulance and she continued to seize all the way.”

Initially, doctors believed it might have been a one-off, but the seizures reappeared and blood samples were sent away to Glasgow for testing. When the results came back the news was devastating.

“The doctor took us into a room and told us that she has Dravet Syndrome; that it affects one in every 65,000 children; that she is never going to walk; she is never going to talk, and she is most likely going to be in residential care for the rest of her life and we have to accept that,” said Vera.

“I said ‘no’. All I remember is saying ‘no’. Apparently, I was swearing a lot, and I don’t usually swear. It went on from there.”

Vera and her husband, Paul, a mechanic, are obviously loving and devoted parents. They now have four children; and over the calendar in the kitchen is a ‘Santa, please stop here!’ sign, with four stockings underneath bearing the names of the children. It’s a typical family scene, but Ava’s life has been a drama, a feelgood story, a heartbreaker — and a tale of the unexpected.

As an intractable condition, Dravet Syndrome instantly puts to bed any notion of a ‘cure’. Ava found herself on larger and larger amounts of different medication as she got older. But all the time she began to confound the initial gloomy forecast for her life.

Vera recalls how “she started to babble a little and had a few words”, even as the side effects of medication became more pronounced. By the time she was two-and-a-half she could walk. Then came five “fairly big seizures” that resulted in a stay in hospital and another new drug — one that works for many children but which prompted a reaction in Ava. She went into a coma for a week.

“That was the first time she nearly died,” Vera recalls. “When she came out of it, she had lost the ability to walk. She couldn’t support her head, all her clothes were hanging off her. It took her another 12 months to get her to build up her weight and get her back to where she had been. I thought the next medicine would be the one to ease things, but the seizures started happening again.”

By this stage, Vera and Paul had reached out to others overseas who had children with Dravet Syndrome, hoping for some practical assistance. It was through these groups that word emerged of families in Oregon and Alaska in the US getting cannabis oil for their children.

“I started looking for evidence for it, at first more to see that it was ridiculous rather than that it would work,” Vera admits.

Yet the more she researched it and spoke online with other families, the more it seemed to offer some kind of respite and hope. One young girl in America had seen a reduction in the number of seizures from a mind-boggling 300 a day to three a month after taking the substance, often referred to as CBD. Yet Vera still didn’t think it was an option for them. But, by October 2015 doctors informed the family that there were no new medications available for Ava. And Vera swung into action.

It might seem odd, in hindsight, but the online petition began way before Ava had ever taken CBD. There was no indication that it would work for her — it was simply a step the family believed they had to take.

“In November 2015 Ava had 18 seizures in eight hours and had a heart attack,” Vera says. “I realised she was not going to survive.”

Vera Twomey with her daughter Ava, who suffered 18 seizures and a heart attack in just eight hours in November 2015.

She is referring to Ava’s longer-term prospects if action wasn’t taken, but at the time it was an elemental crisis. She is trembling at the memory, her voice fraying at the edges — it is every frantic parent, at a moment of profound worry, when your children are at risk and you feel helpless beyond words.

“I am not a public person at all,” she continues, “I never told our business to anybody, really, or how bad Ava was. She looks so well.”

Yet the fear that she could be taken away by a bad seizure persisted to such an extent that she felt they had little option but to drum up public attention and support for access to CBD and THC for Ava. Vera says she recoils at the description of it as “a campaign”, adding: “I was just trying to help Ava for her sake.”

She didn’t want to purchase CBD online, stating that she wanted the security of dealing directly with the people selling the product to her. When it became available in Dublin, she went there at the end of last September and by chance met the Stanley Brothers, who manufacture the product for Charlotte’s Web, who were visiting from the US.

Vera discussed dosage with them and with others in an ever-growing circle of people which also included a neurologist. As little as possible was left to chance. The innocuous bottle, which is legal, states that the oil is mint chocolate flavour.

“We had the bottle in our hand and, you know something, we were still afraid — we were wondering were we doing the right thing,” she says. It brought into focus the way in which a family can be placed at this crossroads and can feel like they are taking a leap into the unknown, no matter how much research and preparation has been conducted. “I want a prescription,” Vera says firmly.

At the end of September, Ava had 23 seizures in 36 hours. Then she began receiving the small dose of the oil in the morning, and again at night. The results were almost instantaneous. Ava had seven seizures in October, nine in November, and three in December.

“The side effects have been increased appetite, better sleep, less pain standing,” Vera says. “She is smiling more, she is brighter, the teachers have said she is engaging more with her peers. It’s a revelation. We are meeting a new side to Ava.”

They are continuing to monitor Ava and are hyper-alert for any negative developments, but as yet there simply haven’t been any. Yet despite the dramatic reduction in the number of seizures, the family still do not have the prescription for use that they would like, and they also want to combine the CBD with THC, which they think might further enhance its effectiveness.

In November Ava had a “massive, massive seizure”, so alarming it prompted Vera into fresh action. She announced that unless something was done for her child, she would simply walk to Dublin to raise it directly with Health Minister, Simon Harris.

“That particular [seizure] rose her that high off the bed,” Vera says. “I think that one could have taken her life, only she had strength enough to fight it off from having the break in October.”

When she told Paul about her plan to walk to Dublin, he thought she had lost her mind and asked her to sit down and have a cup of tea. But the progress Ava had shown since starting to take CBD was tempered by the ever-present danger of ‘the big one’, and intensified the search for anything to keep it at bay. And so Vera went walking.

She got to Donoughmore and found that people were joining in.

“The people started coming from Tower and Rathduff,” she says. “A man named Tim O’Sullivan walked 21 miles with me to Mallow. People came and walked some of the way with us. A man from Bweeng invited me in for soup. People were coming out with water and sandwiches. People drove up from Wexford, they came from Mallow.”

Vera becomes is increasingly emotional as she runs through these memories forged on the roads of mid-Cork.

“Another girl drove as far as New Tipperary Hill with a flask of tea. I thought I was on my own but I didn’t realise there were so many people out there supporting us.”

She left at 9.50am that day and got to Mallow by 6.10pm. Mr Harris rang her at half past six. Vera agreed to postpone the walk. It wasn’t the first time they spoke and it may not be the last. As of last week, his department had contacted Vera and Paul about their request for an exemption that would allow them access THC under conditions and via an application by a doctor.

The Department of Health says: “Cannabis-based products are strictly controlled under the Misuse of Drugs Acts, 1977 to 2016 and the Regulations made thereunder. However, it is open for an Irish registered doctor to apply to the Minister for a licence for a cannabis-based product for an individual named patient, under their care. The appropriateness of any particular treatment is a matter between the patient and their doctor and the Minister has no role in this process. This information has been provided to numerous individuals who have applied directly to this Department for information and has been stated publicly by Minister Harris on a number of occasions.

“To date, one such application from a doctor has been received. The Department is not at liberty to comment on any individual applications.”

Vera and Paul have yet to make an application, and all the while a bill on access to medicinal cannabis has been going through the Oireachtas. Vera stresses she is not part of some lobby group for legalisation or decriminalisation of cannabis — she is a mother striving to do the best for her daughter.

What has happened so far has been “tantalising”, opening up the prospect of future progress in what she freely admits is “an uncertain world”. Their efforts will continue, including a meeting scheduled for January 10 at the Castle Hotel in Macroom that will be attended by Gino Kenny TD, among others.

Santa has been and gone from Coachford and everywhere else, but according to Vera: “This is the best Christmas that we could ever have imagined. Every other Christmas we have been in hospital because of the seizures.”

The sun was shining and there was a rainbow over Dripsey. The new year, Vera believes, could bring more good news: “We are allowing ourselves to hope a little bit.”

www.change.org/p/minister-for-health-cbd-for-ava-support

 

‘I have epilepsy, I am not a pot-head’

Student Sean Fenton, who has epilepsy, believes that using a cannabinoid herbal supplement has transformed his life and opened up a pathway to third-level education and more.

Here is what he wrote in response to Bobby Smyth’s article on the benefits of cannabis which featured in the Irish Examiner last month.

Bobby Smyth’s article in the ‘Irish Examiner’ last month.

I am a 19-year-old boy, who, thanks to medical cannabis (cannabinoid), has been granted an opportunity at repeating my Leaving Cert and getting on with my life after six very hard years. In a system where the Leaving Cert is everything, facing it with very active epilepsy is a daunting and slightly depressing task. Everything and everyone seem to be against you, including the medicine, the seizures and the poor quality of our medical system.

Recently, the advances in knowledge surrounding cannabinoid as a supplement have literally saved not only my education, but my sanity and really my life on several levels.

Dr Smyth only mentions cannabinoid as benefiting those with multiple sclerosis or Dravet’s Syndrome, but my epilepsy has been improved through cannabinoid to levels that I cannot fully articulate. It upsets me to read this argument, as it could be tearing up very hard-gained improvements to the lives of people living with neurological conditions which are otherwise medically intractable. It is as if there is some form of resistance out there around accepting the obvious and enormous benefits of medicinal marijuana.

Let me divulge a little personal experience of my own: At the age of 12 I was placed on a huge sequence of anti-epileptic drugs — about 10 in four years. At 19, my personal current epilepsy prescription holds many well-known names. These range from the obvious yet complex anti-epileptics, to the much harsher benzodiazepines and amphetamines. In my view, these are addictive drugs. Previous prescription drugs caused horrendous side-effects that impacted on every area of my life and development. My brain refuses to function without this daily prescription ‘hit’. If I am three hours late for my epileptic medication, my body will spasm uncontrollably, denying me oxygen and control, in what most people will be aware is called a grand mal seizure.

Non-psychoactive cannabinoid drops, available as food supplements, have improved everything. My seizures, and thankfully my dependence on these horrible ‘drugs’, has decreased. When I’m late for cannabinoid, be it days or a week, I feel no uncontrollable shaking, just a sort of gradual increase in seizures.

What I am not is a ‘pot-head’ — and even my teachers have questioned me on the origin of the huge improvement in my school work and concentration. I shouldn’t have to feel nervous about answering this question. A few drops and a gel tablet of what is not a drug, just a herbal extract, is what I need.

I feel the views expressed around this issue are outdated and sensationalist, and it could seriously affect and impact the lives of people struggling to live with chronic conditions.

Issues surrounding recreational drug use and medicinal use need to be disentangled — and kept that way. Although I’m a teenager, it’s the medicinal marijuana that matters to me, that has, in fact, proven quite lifesaving for me. Some of my bigger seizures are life-threatening.

The other prescribed anti-epileptic drugs caused me to suffer with long periods of deep depression and even worse side effects than that. Cannabinoid has felt benign and gentle on my system, I am so happy that it is not actually another hard pharmaceutical drug.

 

Author: Cenedella.de

Philip J. Cenedella IV - The 2-continent Cannabis Consultant First and foremost, I am a Patient Advocate since 1977. I have also served as a Board of Director for the World Trade Center San Diego, as a Lead Consultant for Deutsche Telekom's Executive Board, Founded the Dayton Human Trafficking Accords and have been a C-Level Business Development Executive for over 3 decades. From California, now residing in Germany and providing professional business development services to firms from the USA and Europe. Call +1.888.206.3264 Skype: philip.j.cenedella eMail: phil@cenedella.de

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