Head or brain injury pediatric patient stories

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One patient’s story: my toddler’s head injury

I call William my spirited child. Like many 3 year-olds, he loves to run and jump, and does it without the slightest sense of fear. His boundless energy has always been one of his most endearing features, but in a split second, it also almost took him from us forever. Read more about William's head injury.

Hard Knocks: Maggie's story

On a Friday afternoon last October, 15-year-old Maggie Hickey was getting ready to go to a high school football game when she started feeling queasy. 

It turned out that Maggie had fainted, smashing her forehead on a doorknob as she crashed to the floor. Eight stitches later, Maggie and her parents left the emergency room thinking that the mysterious incident was over. “It hurt a lot but I wasThe next thing she knew, she was lying on a couch with a whopping headache, a gash over her left eye and only the fuzziest idea about what had happened. “I felt so disoriented and started crying,” Maggie remembers.

 mostly embarrassed,” she says. “I was more worried about what people were going to think of my stitches than anything else.” So, despite a dull headache that wasn’t quelled by Motrin, Maggie returned to school and varsity rowing practice that Monday. But the pressure in her head didn’t go away. Instead, the pain intensified—especially when she exercised, studied or, strangely enough, when she entered brightly-lit areas, like a room with fluorescent lights or the sunny outdoors. Each day ushered in more peculiar maladies: Just sitting still in class caused crippling headaches and Maggie became anxious, fatigued and forgetful. Soon, she couldn’t eat because of constant nausea, and couldn’t sleep because of the incessant pain.

Until her accident, Maggie sailed through school, earning straight As, despite her heavy sophomore year workload. But she started bringing home Cs—partly as a result of losing her homework and forgetting to bring books to class, but mostly because her concentration was shot. As Maggie’s grades plummeted, her social life also screeched to a halt. She stopped going out with friends, preferring to lie down in her dark bedroom, which soothed her symptoms. “It was frightening,” says her mom, Judy, who watched her daughter transform from an athlete bursting with energy to a sluggish girl with sunken, dark eyes. “After three weeks, she didn’t look like herself anymore.” Maggie’s personality changed too, as her confusion and frustration spiraled. “My whole life was falling apart,” Maggie says. “I thought, ‘This just can’t be normal.’”

An invisible epidemic?
Maggie was referred to Children’s Hospital Boston, where the Hickeys were startled to learn that Maggie’s problems were due to the after-effects of a severe concussion. William Meehan, MD, director of Children’s Sports Concussion Clinic in the Division of Sports Medicine, made the diagnosis after assessing Maggie’s brain function through computerized neuropsychological testing, an advanced diagnostic technique that measured her reaction time and verbal and visual memory—the faculties most often affected by concussions. While Maggie was relieved to have an explanation for her symptoms, she found the test itself extremely irksome. “It wasn’t hard, but I couldn’t do it,” she says. “I couldn’t think. My 9-year-old sister could have done better.” Her self-assessment wasn’t far off: Her dismal test scores placed her below the first percentile. “I thought I must have gotten really dumb,” she says. “I just couldn’t imagine a concussion could cause this many problems.”

Meehan understood Maggie’s incredulity. “Only recently has it been recognized that concussions involve any kind of brain dysfunction,” he says. “There’s been a lot of attention paid to them in the past decade, but before that, they were thought to be short-lived and fully recoverable, so people didn’t pay them much notice.” Now, as doctors standardize diagnostic tests and treatment plans for concussions, they’re re-examining many of the long-held basic assumptions about them. Gone is the idea that someone needs to be knocked unconscious to get one; even a mild blow can impact brain function. And gone is the notion that someone needs to be hit in the head in order to be concussed—a blow to the chest can also do the trick.

The “shake it off” approach to concussions is certainly changing—from doctors’ offices to the 20-yard line—thanks, in part, to a surge in media attention. News reports are revealing that some retired NFL players’ devastating mid-life mental problems, including dementia and suicidal depression, may be the result of years of repetitive brain injuries. Media accounts are also illuminating the rare but catastrophic condition called second impact syndrome. For reasons doctors don’t fully understand, people who have sustained a concussion are three times more likely to suffer another one. And the second blow can cause major long-term neurological impairment or, in the worst-case scenario, deadly brain swelling. And while the media spotlight has focused on professional athletes, attention is turning to the potential hazards that younger players face in games and even during practices.

Exactly how many teenagers are affected by concussions—and to what extent—are two of the many unanswered questions about the condition. Children’s Sports Concussion Clinic alone sees about 40 patients a week with concussions—and that’s not counting the patients with more severe head injuries who are treated in Children’s Brain Injury Center. National statistics estimate the number of high school athletes who suffer concussions at 10 percent. But it’s probably much higher, since studies show that almost half of these athletes don’t report their injuries, either because they don’t recognize their symptoms as signs of a serious injury or because they don’t want to get relegated to the sidelines. “If you ask players anonymously at the end of the season if they ever sustained a blow to the head and then had nausea, vomiting or a loss of consciousness, the numbers are much higher,” Meehan says.

The under-diagnosis problem is so widespread that experts describe it as an epidemic. “It’s at a level where it’s happening so often and is so under-reported and under-treated that we don’t understand all the implications,” says Meehan. “What are the cumulative effects? How does memory loss affect children’s school lives? Down the road, how does that loss affect the workforce? We can’t even imagine the ramifications.”

Possible long-term effects are especially hard to study since the traditional laissez-faire approach to concussions has resulted in scattershot recordkeeping. “We have ideas about what happens to kids who are admitted to hospitals with brain injuries, but we don’t know what happens when they’re treated in emergency rooms and go home,” says Robert Tasker, MD, a world authority on head trauma and Children’s new director of Neurocritical Care. One of his goals is to help track the outcomes of brain injuries months, years and decades down the road.

Sleep it off
Meehan prohibits his patients from returning to sports until they’re free of symptoms and their brain function has returned to normal. While this usually happens within a few weeks, he errs on the side of caution, since research indicates that younger players recover more slowly from concussions than college or professional athletes, possibly because their brains and nervous systems are still maturing. But in drastic cases like Maggie’s, he recommends doing absolutely nothing. That is, he prescribes complete physical and cognitive rest.

Nobody knows why—or, truly, whether—a hiatus from both physical and mental exertion boosts the brain’s recovery process. But experts often recommend it simply because it seems to break the cycle of symptoms. (Children’s is conducting a major study to find out why.) So, Meehan essentially benched Maggie, banning her from school, homework, reading and exercise. Her short list of permissible activities consisted of resting, watching TV (strictly the mindless variety), listening to music and light text messaging. While many people would see a doctor-ordered stint as a couch potato as a dream come true, for Maggie it was a nightmare. “It really killed me to not do anything,” she says. “I watched One Tree Hill over and over and only got up to get something to eat. I couldn’t read or work out or go to school. It added up, and I felt like I had lost everything.”

Specialists also occasionally treat patients with medications traditionally used to treat other conditions, but their efficacy is as unclear as the efficacy of the cognitive/physical rest approach. In the winter, Maggie started taking daily doses of amantadine, an anti-viral medication that has revealed some improvements in children with mild brain injuries, but is not yet a tried-and-true therapy. Meehan is testing medications on concussed mice and finding encouraging results. He’s even been able to identify a particular molecule in the brain that may play a key role in determining post-concussive symptoms; if he gives mice a drug targeting this molecule within 15 minutes of getting a concussion, their motor and cognitive function are preserved.

Lessons learned
For Maggie, the drug did seem to help. But she still fought an uphill battle against her unrelenting symptoms. She sat out the rowing season and when she gradually returned to school as a part-time student, the smallest amount of homework set her back physically. “I couldn’t read two pages a night, let alone three chapters,” she says. “I couldn’t remember anything, so I’d take lots of notes, but it was still so hard to keep things straight.” For Maggie, the hardest part was having to justify her frequent absences and doctor-sanctioned light workload to teachers and students who didn’t understand her condition. As the months wore on, classmates accused her of playing up her symptoms. “Even my friends started to think I was milking this concussion thing,” she says. “They didn’t realize I was dragging myself to classes and it wasn’t that sweet of a deal.”

To Meehan, Maggie’s hardship at school is telling, and highlights yet another aspect of concussions that’s waiting to be explored. “Nobody ever recognized that if someone’s brain isn’t functioning properly because of a concussion, his grades are inevitably going to be affected,” he says. “A lot of ‘dumb jocks’ were probably just kids hugely affected by many concussions. But nobody knew it and nobody helped them.” Meehan sees a disconnect between academic and physical expectations: “Kids wouldn’t fail gym if they couldn’t do 10 push-ups with a broken arm. But with concussions, it’s a different story.”

Maggie finally started feeling better in April, six months after hitting her head. Eventually, a whole day went by when she didn’t have a headache, and eventually, several days in a row passed symptom-free. The day Meehan gave her the green light to exercise, she was so excited she went out and ran three miles. “I hadn’t moved in six months, and the fact that I could was so awesome,” Maggie says. She resumed rowing with a vengeance and, with help from a tutor, caught up in school. “Things turned right around and she got her drive back,” says Judy. “She’s her engaging and charming self again.” During Maggie’s final neuropsychological assessment, she scored in the 97th percentile.

Maggie’s full recovery didn’t surprise Meehan. “If a child’s concussion is managed properly, she’ll do just as well at sports and school as she always did,” he says. “The key is making sure these kids get diagnosed and treated while getting the chance to completely recover.” And while Maggie essentially lost half a year of her life, she feels she learned some lessons she couldn’t have picked up in a classroom. “I’m grateful now just to be able to go for a run,” she says. “When you go through something like this, you realize how much you can do when you don’t have a debilitating injury. I feel much more privileged about everything I’m able to do. I never thought like that before.”

Boston Children’s is so much more than a hospital—it’s a community of researchers, clinicians, administrators, support staff, innovators, teachers, patients and families, all working together to make the impossible possible. ”
- Sandra L. Fenwick, President and CEO

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