Medicinal cannabis: Giving Michael the chance to smile once again

The mother of a boy whose health improved since taking cannabis oil is imploring the health minister to licence its use, writes Joe Leogue

A MOTHER who says cannabis oil has had a significant impact on her son’s wellbeing says she received a “phenomenal” response to her open letter to Health Minister Simon Harris in which she called on him to licence the oil for medicinal use.

While it is not illegal to sell the oil in Ireland, it is not licensed for prescription by a doctor, meaning people who use it for medicinal purposes are using the oil to manage their symptoms themselves, sometimes without medical guidance.

Doctors looking to prescribe cannabis products that contain tetrahydrocannabinol (THC) must apply to the minister for a licence to do so.

Last month, Noreen O’Neill from Kilgarvan, Co Kerry, penned an open letter to Mr Harris in which she outlined the changes in her 18-month-old son Michael since she started treating him with CBD oil.

The letter went viral on social media and explained how in December 2016, at the age of just three months, Michael suffered the first of thousands of seizures in his short life.

Following a range of tests, he was diagnosed with bilateral frontal polymicrogyria and global developmental delay.

“In the following few months, all the milestones Michael had reached before his seizures began had vanished, including his smiles, which was soul destroying,” Noreen wrote in the open letter.

“At his worst, Michael was having up to 20 seizures in one day. Can you imagine what it’s like to watch a baby convulsing, Minister? During those times, a typical day in the hospital would be me waking up to get sick before I did anything else,” she said.

Michael was fitted with a tube for feeding but became unable to swallow his saliva, and so, as Noreen explained “drooled to the point of soaking through towels”.

“I was told at this point, that while the tube would protect him from aspirating his milk, they could not protect him from aspirating his saliva, and over time this would destroy his lungs beyond repair, and ultimately end his life,” she said.

“I would from then on spend six hours of each day on feeding, with four feeds daily, each taking one and a half hours,” Noreen said, adding that she also brought Michael to developmental therapy sessions.

“It was often the case where I would have to turn back from therapy or pull in at the side of the road and suction him to stop him choking on his own spit or vomit.

“I remember one day in particular when he vomited so bad he extubated himself. I was standing in front of a farmer’s gate on the side of the road with Michael in one arm and trying to suction the vomit out with the other before he inhaled it.

“The number of times my focus was taken off the road as I would see him change colour in the mirror or a stream of milk pulping out his nose. The amount of dinners I burned from racing between the kitchen and his feeding chair if I heard him make a strange sound or got sidetracked cleaning up vomits.

“My life became a series of hospital appointments, pharmacy trips, therapy trips, trips for his feeding equipment, not to mention the frantic dashes to A&E, of which there were so many.

“Microwave dinners and hand held food running out the door became the norm. I couldn’t remember the last time I had a proper dinner on a plate. I was living in a constant state of ‘fight or flight’. Constantly on edge, analysing, watching, listening, adrenaline rushing, every single day.

“I stopped watching TV as I was terrified I would be distracted and miss something,” she said.

Noreen and Michael’s doctors tried 10 different medications, all of which failed to various extents before she tried CBD oil last month.

“Michael’s seizures halved the following day, and halved again the day after. On the third day, I waited for seizures to come, very much expected them to come, and they did not, and have not since,” she said.

The difference has been life-changing, she said.

“We went for a walk, and I didn’t have to bring the suction machine or cut it short to race back to the house. We watched two Disney movies, to the actual end! I was able to do the hoovering, and not stop at two-minute intervals to check him,” she told Mr Harris.

Speaking to the Irish Examiner, Noreen said the CBD oil has resulted in a “wipeout” of Michael’s seizures, and that he now smiles again.

Others cannot get over the difference it has made.

“Michael’s Jack and Jill nurse brings him home, her dad started crying when he saw the difference in him, he hadn’t seen him since before Christmas,” Noreen said.

“My sister went to Africa for four months, she burst into tears when she came back and saw Michael,” she said.

The response to her letter from people in similar situations has been “phenomenal”, she said, with others from across the country in similar situations contacting Noreen for advice, some contacting her from as far away as Canada.

“People have gotten on to me through Facebook to know what they should buy, where they can get it, how to give it and guidelines on using CBD oil.

“I met a couple in a hotel in Cork, their child was having seizures the whole time we were having lunch,” she said.

Another couple texted her three days after using the oil to tell her their child’s seizures had disappeared.

“One woman had a twitching in her face that spread to her neck. She tried it, and over a weekend her husband got emotional as it was gone,” she said.

Noreen has contacted Mr Harris to implore him to licence cannabis-based products in a similar manner to existing medicines prescribed by doctors.

At the moment, the Department of Health has established a ‘Cannabis for Medical Use Access Programme’ which will provide access to cannabis treatments for patients who are under the care of a medical consultant, for certain conditions — but only if the patient in questions has “failed to respond to standard treatments”.

Michael O’Neill, aged 18 months, was suffering up to 20 seizures a day. His mother says since using cannabis oil, his condition improved dramatically, and she now wants the minister to licence cannabis-based products similar to existing medicines prescribed by doctors.

HOWEVER, Noreen has been frustrated by what she calls the ‘copy and paste’ correspondence she has had with Mr Harris’s office on medicinal cannabis and her son’s situation.

“The licensing system is a joke,” she said. She says she wants to sit down with the minister to “pick apart” the argument he has put forward in favour of the current licensing system.

She points to the replies she has received to her correspondence as evidence supporting her argument that the department does not grasp the challenges facing parents.

“Whilst cannabidiol (CBD) is derived from cannabis, it is not psychoactive and therefore it is not controlled under the Misuse of Drugs legislation, and does not require a Ministerial Licence to access it,” the department wrote in one reply.

“CBD oils are widely marketed as a nutritional or dietary supplement in numerous retails outlets and online. However, it should be noted that it is not authorised as a medicinal product in Ireland,” the department said.

“Yes, CBD is legal in Ireland, yet it is not licensed for medicinal use here,” Noreen replied.

“This product, which has stopped Michael’s seizures where 10 anticonvulsants have failed, should clearly be made available for medicinal use.

“As it stands, parents like myself are taking seizure management into their own hands and out of the consultants’ due to sheer desperation,” she said.

Noreen told this paper that the lengths children are being pushed before they are considered for access to medicinal cannabis is unfair.

“As it stands, kids are being brought to death’s door, they must have exhausted all standard treatment options before they can access medicinal cannabis,” Noreen said.

“Does the minister realise what this means or what this does to their little bodies?”

The

Irish Examiner

asked the Department of Health if Mr Harris will agree to a meeting with Noreen O’Neill.

“Minister Harris’ office will respond to Ms O’Neill’s request for a meeting as soon as possible. It would not be appropriate for the department to comment on an individual case,” a spokesperson said.