Feb. 18, 2003
Watching Kyle Wallace race off to play with a young friend, it's hard to picture this active boy with the dark, spiky hair and the pale, freckle-dusted face as anything other than a typical nine-year-old.
There are no outward signs that his body's defences occasionally attack the myelin sheath that protects Kyle's central nervous system, producing symptoms ranging from temporary vision loss to bouncing-off-the-walls equilibrium problems to extreme fatigue.
The attacks send Tammy and John Wallace racing with their son to the pediatric multiple sclerosis clinic at Toronto's Hospital for Sick Children, about an hour's drive from their Oshawa home.
You see, Kyle Wallace is one of the youngest people ever diagnosed with multiple sclerosis. It's a condition he prefers not to speak about much when he's well, except to admit the attacks he sometimes has are "kinda scary."
The first reference in the medical literature to multiple sclerosis in children dates back to 1906. But throughout most of the century that followed doctors were nearly unanimous in the view that children didn't get the disease, which was thought to mainly strike people - predominantly women - in their 20s, 30s and 40s.
"There is a tendency in the general community to view this as being just post-viral. Or a pinched nerve. Or all sorts of other diagnoses," says Dr. Brenda Banwell, who heads what may be the world's only multi-disciplinary MS clinic for children.
The clinic has a roster of about 40 confirmed cases. Another 50 children are being monitored because they have had one attack of demyelination but haven't had the second attack that is necessary before a diagnosis of MS can be confirmed. Statistics suggest only a portion of them will go on to be diagnosed with the disease.
It's a one-stop shopping sort of place for these children, with specially trained nurses, a physiotherapist, an occupational therapist, a psychiatrist, a neuro-ophthalmologist, a social worker and Banwell, a neurologist who specializes in pediatric MS.
Finding the clinic is a source of overwhelming relief for many of the families seen by Banwell and her staff, families who come from as far away as Greece. Many only come to Sick Kids after seeing a host of other doctors and receiving a raft of erroneous diagnoses.
"I think one of the biggest comments that parents make is that they don't enjoy the expression: 'This is so interesting. I've never seen it before.' Which is unfortunately what they might hear if they're being cared for by someone who . . . has never seen it before," Banwell says.
At the clinic, families trying to come to grips with a frightening diagnosis find people who have some answers and are working to uncover others - and in a setting geared to the young clientele.
"As one parent put it: Their five-year old doesn't read Cosmopolitan and isn't particularly comfortable sitting in an adult waiting room," Banwell says. "It really does matter."
For John and Tammy Wallace, the relief came from finding people who could tell them what was happening to their son and could figure out how to treat him.
"Knowledge is comfort to me," John Wallace explains. "Knowing that they really know what they're doing down there makes me more comfortable in thinking that this is not as big of an ordeal as it would have been 15 years ago.
"It makes it a lot easier to deal with."
Not that it's been simple. When Kyle had his first attack of demyelination, at age four, doctors at his local hospital were stumped. They thought for awhile he had migraines. Then he was quarantined because doctors feared he had meningitis. Then they thought he had encephalitis.
This dragged on for weeks. Meanwhile, Kyle was a pretty sick little boy.
"There was a point where he went right back into diapers," explains his mother, a legal aide for the Children's Aid Society in Toronto. "Couldn't walk, couldn't talk. Couldn't eat. We couldn't even communicate with him at one point."
"For three or four days he was basically comatose," adds his father, a sheet metal mechanic.
Kyle was eventually transferred from his local hospital to Sick Kids - "by ambulance," he pipes up in a tone meant to impress.
Neurologists there were quick to narrow down the possibilities. Kyle had either encephalitis - swelling of the brain caused by a virus - or multiple sclerosis. If it was the former, the attack would be a one-off. It if was the latter, other attacks would follow.
About two years later Kyle had the follow-up attack his parents had been dreading. Magnetic resonance imaging showed new tell-tale lesions on the brain. Kyle had multiple sclerosis.
"I lost it," admits Tammy Wallace, who now seems perfectly at ease with helping her son manage his various medications.
It didn't help that there was scant literature about how the disease affects children or what the prognosis is for kids like Kyle.
Banwell put Wallace in touch with another mother. Her son had gone undiagnosed for longer and had more long-term problems as a result.
"I think that terrified me more than anything," Wallace admits. "Granted she was just trying to put it all in front of us, but it was just like a wave. Like: 'Oh my gosh, what are we dealing with?' "
The Multiple Sclerosis Society was and is keen to help. But at that point their only program for children was designed to assist healthy kids learn to cope with having a parent who has MS.
"MS in children is quite rare. But they are a special group," says Deanna Groetzinger, vice-president of communications for the society, which helps fund Banwell's clinic.
"They do have needs - and their parents have needs - that aren't met from our usual services programs. And that's why we're working closely with the Hospital for Sick Children and the MS clinic there to develop the kind of services, resources that will be helpful to this very special group."
Just how rare pediatric MS is remains unclear. It's estimated that between two to five per cent of MS patients are 18 or younger. Banwell thinks that estimate is low. A clearer picture of how many kids get MS will only come into focus when more doctors realize children do get the disease.
Other questions remain unanswered as well. For instance: If the disease starts earlier in life, are the physical symptoms more severe over time? Banwell thinks that may not be true, but worries that kids with MS may have more cognitive problems than adults, over the long term.
About 30 per cent of adults with MS have what are known as cognitive "deficits" - problems with short-term memory or the ability to organize and prioritize tasks. But their "hard-core knowledge" remains intact, things like math basics and language structure learned in childhood.
"They're very hardwired. You learned them early on and you've retained them. And they become almost second nature. We don't know what the impact of MS would be on somebody for whom none of those have been hardwired, the very young MS patient," Banwell admits.
"I personally have a fair bit of concern about their long-term learning issues."
Banwell is hoping that by studying her young patients - and by collaborating with other centres, such as the pediatric MS clinic at the University of New York, Stony Brook - she and others will puzzle out some of the mysteries of MS. What triggers it? How much is genetic and how much is environmental? Why is it so much more prevalent in northern climes?
Kyle has a question he'd like the researchers to answer. "How's it go
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