Breathing easy

Something as simple as laughing at a joke would sometimes trigger an asthma attack for Hayden Keast. But now, thanks to medication and education, the 10-year-old Winnipeg boy is able to control his condition and live an active life.

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What is asthma?

How can asthma be controlled?

Asthma fast facts

Winnipeg Health Region
Wave, September / October 2010

Ten-year-old Hayden Keast doesn't recall the night his chronic asthma almost took his life.

"All the attacks just bleed into each other," he says, reflecting on a lifetime of living with the condition. "I'm pretty lucky - I can't remember the worst of it."

But his mother, Shelley, certainly remembers. "It was unforgettable," she says. "It was scary, horrendous, unreal."

It happened one evening when Hayden and his family were camping in the Whiteshell. The family - Shelley, Hayden's father, Brian, and siblings Taylor and Shenade - were relaxing around camp when suddenly Hayden was unable to breathe.

The asthma attack did not come as a complete surprise to Hayden or his family; the slightest thing - smoke in the air, strong scents - could trigger one.

As he normally did in these kinds of situations, Hayden tried to relieve the symptoms by inhaling his Ventolin medication through his puffer. But after initial efforts failed to bring the asthma under control, Shelley and Brian took their son to the nearest emergency room in Kenora.

Once the staff there got his breathing under control, they gave Hayden the OK to return to the campground. Back at camp, however, his condition flared again and worsened as the night wore on, necessitating a second trip to the hospital.

This time, the situation called for dramatic action.

"They had to assist Hayden's breathing by placing a mask over his face and squeezing the attached oxygen bag, forcing air into his lungs, as his own breathing was ineffective," Shelley recalls.

This wasn't the first time Hayden required such dramatic treatment for his asthma. But it was the first time that he did not immediately respond.

"It's like he wasn't with us," says Shelley, recalling the event. "His eyes, his face, were glazed over. He had gone completely limp." Even the medical staff seemed taken off guard. Brother Taylor and sister Shenade were beside themselves, in tears.

Eventually, thanks to the efforts of the emergency team, Hayden started to come around, the oxygen ultimately succeeding in bringing his breathing under control. It enabled Shelley to take a breath herself.

"I'd never felt so desperate in my life," she says. "In hindsight, we realize we almost lost him. Eventually, it was determined that Hayden's attack that evening was triggered by an allergy to horse hair - the Keasts had been camping near a stable. Shelley and Brian did not detail the severity of the attack with Hayden afterwards, but they did talk generally about the danger posed by severe asthma attacks, and how important it was to seek help and have trust in hospital staff. "I did not want him to feel hopeless," she says.

Hayden's experience with asthma is not uncommon.

Statistics Canada estimates that as many as 12 per cent of children are affected by asthma, which is defined as a chronic inflammatory disease of the airways inside the lungs.

Although the causes of asthma are unknown, it generally surfaces in childhood, appears to run in families and can be triggered by allergies. Exposure to tobacco smoke and viral infections contributes to worsening asthma in children.

In Winnipeg, asthma attacks account for about 3,500 visits a year to the Winnipeg Health Region's Children's Hospital at Health Sciences Centre. September is generally considered the worst month of the year for admissions, with children making 200 visits to the Children's Hospital emergency in September 2009.

Even children with mild asthma can be at risk for having a severe attack. But for most children with asthma, visits to the Emergency Department can be prevented by avoiding triggers and taking controller (anti-inflammatory) medicine.

Hayden's story illustrates the challenges involved in managing severe cases of asthma. But it also underscores how even the most severe cases can be succsessfully managed through a combination of medicine and education.

Even before he was born, his parents knew there was a chance he would have asthma. While there's no history of asthma in Brian's family, Shelley's cousin died at the age of 17 from chronic asthma, and Shelley was diagnosed with the condition after she and Brian married, and she became pregnant.

Her illness proved far less severe than what her oldest son, Taylor, would suffer. Middle child and only daughter Shenade would also prove asthmatic, although to a much lesser extent.

It would be young Hayden who would get the worst of it. His problems started early. "When you'd hold him in your arms as an infant, you could just see the chest and surrounding muscles working so hard with every breath," Shelley says.

Baby Hayden made his first trip to the emergency room at six months of age. He was diagnosed with asthma and put on medication. "We knew at that time we were heading for trouble," Shelley says.

Trouble came in many forms. He would often come down with pneumonia, which on one occasion caused his left lung to partially collapse. His adenoids, a lumpy tissue mass in the back of the nose that forms part of the immune system, had to be removed.

Hayden's condition always seemed to be fluctuating between the "yellow" and "red" zones. The former usually requires an increase in medication, or making a doctor's appointment. The red zone requires a trip to the nearest hospital.

"Hayden was never in the green zone," Shelley says. Never did he know normal breathing, normal sleep, or exercise without respiratory problems. Using his reliever medicine became a daily routine, especially if he did any physical activity.

Winter was particularly tough on Hayden. He could only manage short walking distances outside, which meant he had to be dropped off wherever he went. "It would be like the wind took two handfuls of air out of my lungs," he explains, snatching two fistfuls of air for emphasis.

In any season, he was unable to go outside alone, lest he got into trouble. It was necessary to carry his inhaler kit with him everywhere, at all times. Certain activities and experiences - like skiing, tobogganing, or flying on a plane - were simply off-limits.

When it came to sports, Hayden could only participate to a very limited extent. In soccer games, for instance, he would play goal. Even then, however, he often couldn't last an entire match. Neighbourhood walks with his family would frequently have to be curtailed.

Hayden's asthma could seemingly be triggered by almost anything - even giggling at a joke would often be enough to prompt an attack. "He didn't laugh," Shelley says. "His friends would not tell jokes around him and he didn't want to laugh."

When picked up from school, Hayden would often greet his mom and then be in tears. "It was such hard work trying to keep up with everyone in school - all the talking, all the out-loud reading - when he couldn't breathe. It (the tears) was pure exhaustion." And when he'd get home, he'd want to go straight to bed, simply to avoid the work it took to breathe.

Sleep, however, did not stave off his suffering - in fact, it was often a luxury. "There was often no sleep in this house," Shelley says. Hayden would have an attack almost nightly for several years, sometimes more than once in a single night.

All this inevitably affected Shelley's and Brian's work lives: up until a few years ago, Shelley was working half-time at Grace Hospital; Brian would often go into the office after-hours to get caught up, after having to leave work upon getting a call from Hayden's school. Even holidays brought limited joy, with Hayden spending at least one Christmas in the emergency room.

The turning point for Hayden came a few months after the Whiteshell incident. The attacks had already been gaining in frequency and intensity. And there was something more. When Hayden's airways filled with fluid, he was now gurgling - precisely what Shelley witnessed in her cousin before her death.

"I was sweating," Shelley says. "Brian and I finally had a discussion in which we admitted to ourselves . . . that we might ultimately lose our child."

By this time, Hayden's condition was so serious, that he was being referred from the Grace to the Children's Hospital Emergency Department at Health Sciences Centre. That would turn out to be a blessing. Every child who visits the Children's Hospital Emergency because of asthma is automatically referred to the Region's Children's Asthma Education Centre. Established in 1997, the centre has demonstrated that families graduating from the CAEC's Family Asthma Program had fewer emergency room visits, caregivers missed less work and quality of life improved for children and their families.

Since he was a toddler, Hayden had been in the care of Dr. Allan Becker, Medical Director of the Children's Asthma Education Centre.

Over time, Becker could see that Hayden's condition was worsening and required special attention.

"He (Hayden) would come in to the hospital regularly with his airways completely shut down," says Becker, who is also Professor and Head of the Section of Allergy and Clinical Immunology, Department of Pediatrics and Child Health at the University of Manitoba. At its worst, it wasn't just that Hayden struggled to breathe; it was that struggling to breathe just worsened things because his muscles would spasm all the more. The most he could manage were "guppy breaths": short, fish-like gulps of air. Any over-exertion, and his body would be set off again.

It was now becoming clear that Hayden's asthma was being exacerbated by allergies. Generally speaking, allergic asthma can be traced to a naturally occurring substance in the body called Immunoglobulin E (IgE). When IgE binds to allergens, it triggers the release of chemicals that can cause inflammation. This is what leads to the constriction of airways.

In Hayden's case, having allergies on top of his pre-existing asthma meant there was now just one more ever-present trigger that could set off an attack at any time.

In addition to ensuring that Hayden and his family received education about the boy's particular issues, Becker also enrolled Hayden in a clinical trial for a new drug called Xolair. This drug is designed to help children with allergy-related asthma by capturing the IgE before it can bind with an allergen and trigger the inflammation.

The drug had an immediate effect on Hayden. His skin tone changed, his breathing became normal. Relief periods became more frequent, with his Ventolin medication finally proving immediately effective.

Now, with Xolair working its magic, Hayden and his parents could concentrate on learning how to better manage the boy's condition.

"Education is the key factor to managing any health condition," Becker says. "And with asthma, that's true in spades."

For Hayden, talking with the centre's staff was an unprecedented experience. For the first time in his life, Hayden thought he was really being heard. "If I tried to explain something, they would understand. It was like, Wow! Someone finally gets it!"

Hayden also became fast friends with Becker. "Dr. Becker treats me like a king," Hayden says, his face glowing. "He has lots of patients, but he makes you feel like you're his only one."

It was transformative for Hayden's family as well, who were educated on his condition and its management like never before. "The CAEC staff started us from square one," says Shelley, who is a registered nurse. "We're so well-trained now, thanks to them."

There are various components to asthma education, say Nancy Ross and Jo-Anne St. Vincent, asthma educators at the Children's Asthma Education Centre. Education is more than giving information about medicines, they say. It is also about teaching children and families to recognize changes in asthma symptoms, problem solving around avoiding triggers, and working with their day care or school and doctor.

The centre holds classes for parents, school-age children and teens during the evenings. The focus is on developing skills required to monitor and manage asthma day to day. This includes introducing an Asthma Action Plan, teaching families how to respond to changes in the asthma. Educators teach kids to listen to their bodies, recognize the warning signs and to know when to ask for help.

"What we teach is for parents to watch for changes in the asthma," says Ross. One way of doing this is through an asthma tracker quiz, which determines whether a child has been staying within the green zone.

While there is plenty of information about asthma online, the centre does something for parents that the Internet can't do. "Anyone can pull up information about asthma online," says Ross. "But that can't answer every practical question families might have, or allay every parental fear. "What we stress above all is that asthma can be controlled. It does not have to look like the emergency room."

As Ross and St. Vincent explain, a common problem is that many parents may not pick up on their child's symptoms - often because kids don't always verbalize them. Hence, parents may assume their children don't like sports, when in fact it's because their kids can't breathe. "This is why classes can be an opportunity for parental discovery," says St. Vincent.

Today, thanks to medication and education, Hayden is in a much better place. His pulmonary functions have become normal. He is now in the green zone all the time. The quiet boy whose physical activity had been so inhibited is now active like never before. Not only has he achieved a black belt in tae-kwan-do, he also plays basketball and lacrosse. People even say, "Is that Hayden? The same Hayden?"

His life-altering experience has changed the lives of the entire Keast family. They have now taken their second ski trip, something they could never have considered in the past. And then there are the simple pleasures now available. For example, Hayden can drink a slurpee, whereas previously the cold liquid would have induced spasms. "Everything's different!" Hayden effuses, giddily summing up his new life.

Oh, and that's another thing - the talking. "Oh boy, did he start talking!" Shelley exclaims. He even started telling jokes. And he can laugh at them, too.

"It's been roughly two years that we've been in good control of Hayden's condition," Brian says. "And there's no sign at present of any relapse to the bad old days."

Becker sees the improvement in his patient as part of a continuum. "In the '70s and '80s, the aim was to keep patients out of the hospital; in the '90s, it was to keep them out of the emergency room," Becker says. "Now it's quality of life that's emphasized - the objective is to help patients live a normal life, and achieve what they set out to achieve." And for that, the Keasts are almost unspeakably grateful.

Kenton Smith is a Winnipeg writer.


About Wave

Wave is published six times a year by the Winnipeg Health Region in cooperation with the Winnipeg Free Press. It is available at newsstands, hospitals and clinics throughout Winnipeg, as well as McNally Robinson Books.

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