QWeekend: Son’s seizures put family through ‘four years of hell’

IMAGINE this: you’re on a plane and your son collapses. You, a doctor and a paramedic work to save his life. But when the plane lands, what the cabin crew tell the ambulance - and what the passengers are allowed to do - is enough to make a mother cry.

Hi Genevieve, my sister-in-law's phone number is 0419 674 396 and my brother Greg's is 0420 357 598. The story isn't finished yet but this is what it says so far. Lachie seems to be travelling okay at the moment. He usually has his seizures in the morning so before anyone goes up I could just ring them to make sure he's not in hospital. Their address is 42 Skyline Drive, Toowoomba. There's two Skyline Drives in Toowoomba. They are in Blue Mountain Heights. Greg is on days off this week I think Wednesday, Thursday and Friday, but he works shift work so you could work around that. Rhonda has photos of Lachie in hospital.

NOT here, not now.

My teenage nephew Lachlan Miles lies unconscious on the floor of the chapel in the Garden of Remembrance at the Toowoomba Crematorium, 100km west of Brisbane, three metres from his 95-year-old great-grandmother’s coffin. Rita Doran, affectionately known as Dor Dor to her grandchildren and great-grandchildren, is being farewelled by about 30 family and friends. Lachlan and Rita were particularly close, despite their 81-year age difference. As her health deteriorated in her final years, he visited her often, empathising with her frailty, while also confronting the possibility of his own death. The benedictory prayer has just finished when Lachie collapses into my brother Greg’s arms and stops breathing.

“May you find strength and support in your love for one another. And may you find contentment and peace in your hearts. Amen.”

As 000 is called and the chapel is evacuated, Greg and his wife, Rhonda, are kneeling on the floor next to the youngest of their three sons, shaking him and desperately willing him to breathe. Lachie turns blue as the oxygen levels in his blood plummet.

“Breathe, Lachie, breathe,” Greg pleads.

“Not here, not now,” Rhonda says.

My sister-in-law has just said goodbye to her grandmother, the woman she describes as one of her best friends. The thought of losing her son on this, of all days, is unbearable.

“I was frantic,” she recalls. “I really thought he was going to die that day. All I could think of was that I was burying my grandmother, and my child might well die next to her coffin.”

Everywhere Lachie goes, a big red bag follows him. It’s been taken to football games, to the movies, family weddings and on fishing trips. It was outside the chapel in the family car during Rita’s funeral on April 1 last year. The bag contains resuscitation equipment — oxygen, drugs, tubes, needles. A monitor that clips to his finger measures his heart rate and the oxygen levels in his blood.

Greg, a medical laboratory scientist with Pathology Queensland, and Rhonda, who ran her own town-planning business before Lachie’s illness, have been trained to deal with his emergencies until paramedics can get to him. By the time an ambulance arrives and stops beside Rita’s beloved EH Holden Special, which has been parked outside the chapel for her service, Lachie is still unconscious, but he’s breathing again. He’s taken to Toowoomba Hospital under lights and sirens, as he has been dozens of times before. Hours later he recovers and returns home to sleep off the drugs used to save his life. Until the next time.

It’s a dramatic day in four years of dramatic days.

LACHIE WAS A POPULAR, HAPPY AND HEALTHY 11-year-old, an above-average student in Year 6 at Toowoomba East State School who loved playing soccer and practical jokes, tigers, and the colour yellow, when he had his first seizure on July 21, 2011. Greg and Rhonda had kept him home from school that day. He was complaining of aching muscles and a fever. In the hour leading up to Greg finding him unconscious on the lounge in front of the fireplace in their three-storey home, with views of the Toowoomba Range, Lachie had been alone in a spa bath.

“He could have drowned that morning,” Greg says. “When I walked in and found him in the lounge room, he was shaking, frothing at the mouth and blue. I rang an ambulance and just held him.” In that moment, the idyllic life Greg and Rhonda shared with their three sons ended, marking the beginning of what Rhonda describes as the family’s “four years of hell”.

Since that day, Lachie, now 15, has had close to 80 prolonged seizures, known medically as status epilepticus — those that last 30 minutes or longer. In his case, some have continued for up to three-and-a-half hours. His heart rate has doubled to 155 beats a minute during seizures, putting him at risk of a cardiac arrest. He’s required life support seven times, been flown by emergency helicopter from Toowoomba to Brisbane on three occasions, and is no longer well enough to go to school. Three times, his mother has found him unconscious in bed, and feared he had died in his sleep. Even when Qweekend arrived for a recent photo shoot, he had a seizure and was taken to hospital, unconscious. The shoot had to be rescheduled five days later.

To keep him alive, Lachie has to be watched 24 hours a day. When the strain on the family became unbearable in mid-2013, Disability Services Queensland provided funding for carers at night. Greg, 47, and Rhonda, 46, are grateful for the help they’ve received. Twice, however, carers have fallen asleep on the job.

“It’s hard putting the care of your child in someone else’s hands,” Greg says.

Within weeks of Lachie falling ill, he started ballooning in weight, transforming from a stick of a kid, weighing 41kg, to more than twice that size in less than a year. Doctors have few answers. There is no known history of epilepsy on either side of Lachie’s family. Although he had tested positive to influenza after his first seizure, no evidence of the virus was detectable in his cerebrospinal fluid to indicate it had attacked his brain. Tests for other infectious diseases proved negative. Days before the beginning of Lachie’s medical crisis, my brother’s family, including older sons Connor, then 13, and Alexander, 15, had arrived home from a holiday to Malaysia. Despite speculation he might have had viral encephalitis, it’s turned out to be one of many medical blind alleys.

No fewer than 11 anticonvulsant medications have been trialled. None works. Lachie is among the 30 per cent of patients whose seizures fail to respond to prescribed drugs. In April last year, soon after Rita’s funeral, surgeons operated to implant a vagal nerve stimulator in his chest. Like a heart pacemaker, the device sends intermittent electrical signals via the vagal nerve, on the left side of his neck, to his brain. It provides no respite. After scans indicated a cyst in his pituitary gland had almost doubled in size since its discovery following his first seizure, he had more surgery in August to drain it.

As a result, the vomiting that had plagued Lachie almost every day since he first became ill has dissipated and he has started to lose weight. He continues to have violent seizures every couple of weeks but, in some cases, he requires fewer “rescue” drugs to dampen the electrical activity in his brain and bring him out of the convulsion. The surgery has provided partial relief, though while he’s still having seizures his suffering is ongoing, and his family will not give up searching for answers.

The psychological battle, at times, is as difficult as the physical one. “My seizures bully me,” Lachie says. He has short-term memory loss, is socially isolated and repeatedly tells his mother: “I want to die.” His level of hopelessness is such he’s asked her, in vain, to sign a “do not resuscitate” form on his behalf. “The stress of dealing with a seriously sick child is at times almost too much to bear,” Rhonda says. “To watch Lachlan decline physically, mentally and emotionally can only be described as watching your son being tortured.” She tells doctors: “If he dies, I want to be able to stand at his funeral knowing I’ve done everything I possibly can.”

While the focus is understandably on Lachie, the impact of his illness has had a ripple effect — more like a tsunami — engulfing all his family. Greg and Rhonda, who have been married 25 years, enjoy little time alone together. They have limited time to invest in their other children. Rhonda spent more than half of 2012 in Brisbane, while Lachie was in hospital, away from her other sons. Alex, now 19, still managed an OP1 and won a $120,000 scholarship to Australian National University in Canberra to study engineering and business. Connor is in Year 12 at Downlands College. “They’ve had to deal with Lachlan’s emergencies at three or 4am, watch him being resuscitated and taken off by ambulance, and then go to school,” Rhonda says. “They hold down part-time jobs and they get on with life.

We have really tried to instil in them that, no matter what’s thrown at us, we keep going, we spend absolutely no time feeling sorry for ourselves. That’s wasted energy.”

THE QUEST FOR MORE OPTIONS FOR LACHIE has led his parents down an unexpected and controversial path. From their home on the conservative Darling Downs, after exhausting everything conventional medicine has to offer, they have become unlikely political campaigners for the legalisation and regulation of medicinal cannabis.

Both were brought up with strong Christian values. “We were taught to believe that the use of marijuana was a scourge on society,” says Rhonda. “We still do not support recreational use of marijuana in any way, shape or form. If you have a healthy brain, why would you take anything that would alter your mental state? But medicinal use to provide relief to the sick and dying is a different issue.”

Given their backgrounds, they were sceptical about medical cannabis at first.

“Greg takes a very scientific approach to everything in life,” Rhonda says. But the more they researched, the more they became convinced that medicinal cannabis oil might help some children, such as Lachie, with treatment-resistant epilepsy. Like cancer, epilepsy is not one disease. It has many causes and differing levels of severity. In Lachie’s case, the severity is off the scale. It would be foolhardy to believe medical cannabis will be a magic bullet for every patient. “It may not be a miracle oil for Lachlan, but it’s an option, and frankly we need more options,” Rhonda says.

They’ve found support in unexpected places. In one of the 11 public hospital emergency departments they’ve ended up in with Lachie, they were surprised when a doctor broached the subject of medicinal cannabis, given the reluctance of many Queensland medical specialists to discuss the issue with patients. As Lachie lay unconscious, the emergency doctor spoke candidly and compassionately with Greg and Rhonda about whether they had considered the possibility of stepping outside traditional medicine. “He said: ‘Look, there’s well-documented evidence overseas, particularly in the US, where they’re using medicinal cannabis oil for seizure control’,” Rhonda says. “It was a fairly short conversation. He basically asked us if we’d thought about it for Lachie. We said: ‘No, it’s illegal.’ But it reinforced to us that there’s some medical benefit in

cannabis oil.”

They’ve had similar discussions with other health professionals. “We are appreciative to those people who have whispered to us in hospital corridors and given us information in relation to medical cannabis as being an option,” my sister-in-law says. “It’s been humbling.”

Medical cannabis use is permitted in 23 US states and more than a dozen countries, including Canada, Switzerland, the Netherlands and Israel. Greg and Rhonda know families who have flown their children to the US to gain access to medicinal cannabis oil legally. It’s an option unavailable to Lachie, given the severity of his seizures. Even driving him to Brisbane for medical appointments, or to the Gold and Sunshine coasts for family holidays, is nerve-racking, particularly in heavy traffic. He has had seizures on the M1 and the Bruce Highway. Everywhere he goes, thoughts turn to how paramedics would get to him in an emergency.

In February last year, Lachie was taken to Sydney on a commercial flight, accompanied by a doctor and paramedic, for a second opinion on whether the growing cyst in his brain could be causing his seizures. He collapsed in his seat ten minutes into the return flight, triggering a midair emergency. Lachie was dragged into the galley unconscious and as stewards continued preparing food for other passengers, his parents, the doctor and paramedic worked on him to save his life. “That was a particularly bad one,” Greg recalls. An ambulance was not permitted on the tarmac to meet the plane and, after landing, passengers were allowed to step over Lachie to get to their connecting flights. “It was just shocking,” my brother says, shaking his head. “I have lost count of the number of days I thought my son would die,” says Rhonda. “That was another one of those days.”

Putting Lachie on an overseas flight to get him to a country where doctors could legally administer medical cannabis would risk his life. Giving it to him in Queensland, where it remains illegal, risks a possible jail term and child safety officers knocking on their door.

As the medicinal cannabis debate gains momentum in Australia, Greg and Rhonda have met and spoken with parents who are already giving it to their children. Deisha Stevens, 8, of Coffs Harbour, on the NSW north coast, has been taking cannabis oil since April last year. She celebrated 12 months seizure-free earlier this month. Her father, David, turned to medicinal marijuana as a last resort when doctors told him there was nothing else they could do for Deisha, who was taking seven epilepsy drugs for the extremely rare genetic condition, continuous spike waves during slow-wave sleep syndrome. “I wasn’t happy to sit back and watch my child regress and die,” he says. “You do what you need to do. Before the switch to medicinal cannabis, Deisha couldn’t read, couldn’t write, she only had a few words to say. She was basically a baby inside a child’s body. Now, she’s a bright, bubbly girl who lights up a room. In September last year, she sat down and wrote me a Father’s Day card.”

Stevens is concerned that publicity surrounding success stories, such as Deisha’s, has created a new black market for medicinal cannabis oil in Australia, with desperate parents paying thousands of dollars for a dodgy product. “More and more families are looking at trying it,” he says. “They’re buying stuff and they don’t know what they’re buying. There are people out there selling snake oil. I know of families, both in NSW and Queensland, who have spent ridiculous amounts of money, between $3000 and $6000, for a product that tastes like petrol and sends their kids bouncing off the walls.” His concern is shared by Queensland Chief Health Officer Dr Jeannette Young. “Recent analysis in Victoria of products sold as cannabis oil purchased over the internet by Victorian families shows that 40 per cent of the products did not contain any cannabis,” she says. “It is very important to ensure that any medicinal cannabis products made available to the public are safe, efficacious and appropriately registered as medicines.”

In NSW, despite going public with their story, Stevens is protected under guidelines issued by LNP Premier Mike Baird giving police discretionary powers to decline to charge patients with a legitimate use for medicinal cannabis.

“I’m confident we’ll never have a knock at the door,” he says. “Basically, we’ve got a full amnesty.”

After meeting the Stevens family in January, Greg and Rhonda contemplated becoming “health refugees” and moving to NSW to give them protected access to medicinal cannabis for Lachie. For the time being, they have chosen to remain in Queensland to allow Connor to finish high school, for Greg to continue working and for Lachie to be close to Toowoomba Hospital and the “amazing” paramedics and doctors they credit with saving his life over and over again. “Hands down, it’s the best hospital we’ve been in,” Rhond says.

“There’s an attitude, a culture, that’s wonderful.”

POLITICAL SUPPORT FOR MEDICINAL CANNABIS law reform is growing. Toowoomba-based LNP Senator Barry O’Sullivan, a former drug squad detective, has backed moves to allow medicinal cannabis use in cases such as Lachie’s. O’Sullivan is on the Senate’s Legal and Constitutional Affairs

Legislation Committee, which has been inquiring into a private member’s bill drafted by the new leader of the Greens, Senator Richard Di Natale, designed to legalise medical marijuana. If passed, the bill would create an independent body of experts, the Office of Medicinal Cannabis, which would oversee the growing, prescription and distribution of medical marijuana products.

O’Sullivan says he’s been moved by the testimonies of people such as Rhonda, and also Paul Neville, former federal LNP member for the Bundaberg-based seat of Hinkler, whose 10-year-old granddaughter Ava has been taking medicinal cannabis oil to control seizures related to tuberous sclerosis. “When I see a conservative warhorse such as Paul Neville, a man I respect greatly and who has mentored me politically over 35 years, give evidence about the positive impacts of a cannabis derivative, that was the crossover line for me,” O’Sullivan says.

“There’s no doubt that in the areas of epilepsy, chronic pain, nausea from chemotherapy treatment, and conditions associated with AIDS and HIV, the anecdotal evidence about the benefits of cannabis is voluminous and compelling.”

O’Sullivan, who remains steadfastly against decriminalising marijuana for recreational use, says the push towards a federal framework to allow medicinal cannabis use needs to be advanced cautiously and scientifically. “There’s research and development that has to happen,” he says. “You’ve got to identify the conditions the drug can be used for after human trials. In the meantime, we should do whatever it takes to protect people with pre-existing conditions, after primary treatments have been exhausted, who have genuinely accessed the product for a medicinal application. They need to be insulated from any sort of prosecution. I’m motivated to try to get mums and dads out of harm’s way as they do what we all do — look after their loved ones.”

The significance of O’Sullivan’s stance cannot be overstated. It’s “very rare”, he says, for a “burnt-out, tired, old National Party senator” to agree with the Greens on anything — including the weather. “We are so ideologically opposed on every issue,” the former LNP powerbroker says. “But here’s one occasion where I must salute Senator Di Natale. It’s a brave bill. It’s a timely bill.”

Psychiatrists, such as Tasmania’s Dr Eric Ratcliff, are nervous about legalising medical marijuana, given the link between regular recreational use and psychosis. Studies of young adults have suggested cannabis use can precipitate psychotic symptoms and disorders, particularly in people with a family history or a genetic predisposition. “Schizophrenia appeared to be getting less frequent 30 years ago, but it’s becoming much more frequent now,” Ratcliff says. “The accumulating evidence is that it’s use of cannabis in the early to middle teens that produces the highest risk. Anything that increases the risk is potentially quite serious. When there’s consideration of the use of the drug in children with epilepsy the risk could be quite high.”

Greg and Rhonda counter that argument with their personal experience of epilepsy medications. They say some of the anticonvulsants Lachie’s been prescribed have also caused psychosis, and the long-term effects of those drugs on the developing brain are unknown. The boy nicknamed “Mr Please and Thank You” by his maternal grandmother, Bonita Cattell, has been admitted to mental health units three times. He’s had to be prevented from jumping off balconies and out of moving cars. His brothers have had to sit on him to stop him from injuring himself. During one hospital admission he was strapped to his bed, nurses have called security officers to his room, and at times he’s needed sedation. The first anticonvulsant he was prescribed four years ago, Keppra, has only recently been the subject of a warning by the US Food and Drug Administration that patients should be watched for behavioural abnormalities and psychotic symptoms.

Other side-effects of epilepsy drugs can include osteoporosis, dizziness, drowsiness, vomiting and swollen gums.

Addiction policy expert Professor Wayne Hall, director of the University of Queensland’s Centre for Youth Substance Abuse Research, says the effectiveness of medicinal cannabis in epilepsy is well-deserving of research. But he says suggestions of governments becoming involved in growing marijuana and supplying the drug before the results of trials are known need to be thought through. “Once governments start providing something, it’ll be harder to find out whether it works or not,” he says. “People won’t want to participate in trials; they’ll just want to get the drug. If we decide further down the track that it isn’t very effective for a particular purpose, it would be very difficult to stop giving it out.

“In the meantime, I don’t have a problem with state governments deciding to exempt from criminal prosecution people who might use cannabis for defined medical purposes. The uncertainties about the potential adverse effects of sustained use of cannabis for medical use would need to be clearly communicated.”

Medical practitioner Dr Jeanne-Marie van der Westhuizen, who is studying for her master’s in addiction medicine, says the debate is complicated by the different species of cannabis available, the dozens of compounds within the plant that produce different effects, and the variety of ways the drug can be administered. Recreational users seek plants with higher levels of the psychoactive ingredient, tetrahydrocannabinol (THC), which produces the “high” they get when they smoke the drug. But the substance believed to contain anti-seizure properties, cannabidiol (CBD), does not involve getting “stoned” and is usually given orally, as an oil-based product.

“Different forms of cannabis have been proven to be medically useful in seizure disorders, anti-inflammatory bowel disorders and for chronic pain,” van der Westhuizen says. Because cannabis is scheduled as an illegal drug, she says research has been stifled. “Cannabis has been painted as this terrible evil — so evil that we cannot possibly even research it, which has only done us harm,” van der Westhuizen says. “It’s denied people what is potentially a really useful medication.” She says strains of cannabis that are high in THC can harm the adolescent brain with heavy recreational use. “But we also know that some conditions, like Lachie’s, that involve repetitive, uncontrolled seizures also damage the brain, and that medical science, at this time, is unable to help him.

My opinion that children, such as Lachie, should be allowed to try cannabis is also a stance adopted recently by the American Academy of Pediatrics.”

Rhonda has tirelessly taken Lachie’s case to politicians on both sides of the divide, federal and state, talking to anyone who will listen. Earlier this year, she wrote to Queensland Premier Annastacia Palaszczuk. Out of the blue, while she, Greg and Lachie were enjoying a family holiday in Caloundra, on the Sunshine Coast, Palaszczuk phoned. Before flying to the Council of Australian Governments meeting in Canberra, where medicinal cannabis was to be discussed, the Premier sought a briefing from someone at the heart of the debate — Rhonda.

Three days later, she announced that Queensland would join NSW and Victoria in Australia’s first medicinal cannabis trials. “Talking to Rhonda confirmed for me the need to explore this option further, if it meant even the chance of preventing children like Lachlan from experiencing any more pain and distress,” Palaszczuk says. “I hope [Rhonda] now knows she’s not alone. My government is listening and my government is acting.”

Details of the trials still need to be worked out and the possibility of an amnesty addressed. But Lachie’s story has moved a Premier. He has no idea he’s become the face of the medicinal cannabis debate in Queensland. All this 15-year-old wants is for his seizures to end and to play soccer again for Toowoomba’s Willowburn Football Club.

Trace Lachie’s journey at facebook.com/LachlanMilesSupporters

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