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Monday, November 24, 2014

Parent Dilemma: When A Kid’s Concussion Lingers On

From WBUR 90.9 FM's Blog "CommonHealth"

By Carey Goldberg
November 21, 2014

When Eli Davis was 15, his ski popped off in the middle of a steep, bumpy slope and he went suddenly airborne, then landed hard, the back of his head slamming down against unyielding ice. That was his first concussion.

A few months later, at soccer camp, he was defending the goal when a breakaway player took a shot from just five feet away and it rocketed right into his face. He finished the game, but he remembers thinking, “Oh…That was not a normal hit.” Another concussion, a worse one.

So far, so familiar. Efforts to expand awareness about the risks of concussion have exploded in the last few years, changing youth sports that had long been more cavalier about hits to the head. Coaches and parents take courses on identifying and treating concussion. Most know to err on the side of caution with head injuries — “When in doubt, sit ‘em out” — and watch for the telltale symptoms that may follow, from dizziness to headache to brain fog.

What fewer know, however, is that while most concussions clear within several days or weeks, a small minority of cases last much longer — like Eli’s.

“He looked at the two of us and said, ‘I don’t care about soccer. I care about the rest of my life.'”
– Al Davis, about his son, Eli

For months after the soccer injury, he suffered a mild headache that would not subside; grogginess and fatigue; sensitivity to light and noise; an inability to think hard that made learning impossible. He found himself stuck on the couch at home, feeling ever more “cabin sick,” when he wanted desperately to be back at school and on the soccer field.

“You can only watch so many seasons of ‘Lost,’ ” he says.

Dr. Neal McGrath, a neuropsychologist and nationally known expert on concussion, estimates very roughly that perhaps 10 to 15 percent of kids with concussions have “longer, tougher recoveries,” often when they’ve accumulated too many concussions, or their injuries have come too close together. That probably amounts to thousands of American children living through prolonged concussion recoveries each year, he says.

Now, Eli’s parents, Robin Friedman and Al Davis of Brookline, Massachusetts, are creating an online venue where those kids and their families can connect, learn from each other and from authorities like Dr. McGrath, and gain support for the long haul they may face.

Professional Web and video content creators who specialize in patient education sites, Friedman and Davis are in the midst of shooting videos like the one above and the others in this post for a site they’ll call Connect2Concussion. They’re trying to fill a void they found as parents groping their own way through post-concussion recovery and all the dilemmas it entails.

Though Eli is thriving now as a sophomore at the University of Massachusetts, his parents still vividly remember how frightening and confusing his condition was in high school. They were worried at first by each day of school Eli had to miss, Friedman says, then scared by how long his symptoms lasted.

“We just didn’t get it,” she says. “With a broken bone or a sprain, you can take an X-ray and you can see it’s healed, and then you know what to do,” she says. “With concussion, they just send you home. It could really be two days or it could be two years, and everything in between, because every child is different, every injury is different and every recovery is different.”

“It gets crazy,” Davis adds, “because every day that goes by, it’s like sand going through an hourglass. You have no idea. You don’t know if he’s going to be OK on Friday, next Monday or two months from now. And what we’ve learned subsequently is that two months from now is actually a reality for people. A year from now is a reality for people. Or it could be three days and everything is good to go.”

Concussion is very manageable, McGrath emphasizes. “But there are do’s and don’ts, if you will, many involving regulation of physical and cognitive activity, that people should understand, going into recovery. And when symptoms are ignored or mismanaged, there’s the risk that the person in recovery can feel stuck, or actually have symptoms become more intense.”

Eli was prescribed the standard treatment: rest, particularly “cognitive rest,” which his parents learned meant he should limit or avoid activities like texting, computer work, even reading. Cognitive rest is the universally accepted recommendation for the first stage of recovery, McGrath says. But it can be very challenging in practice.

“You can’t take a teenager and put them in a dark room or suspend them in animation until they get better.”
– Al Davis

“You can’t take a teenager and put them in a dark room or suspend them in animation until they get better,” Davis says. The situation calls for the art of compromise often familiar to parents of teens, he says: “You have to say, ‘Maybe your friends can come over tonight for a couple of hours.’ or ‘You can watch “Lost” but just don’t get too involved in it!’ You have to find a way to mediate the recovery.”

This balancing challenge is the kind of area where the website in the works can really help, McGrath says. Visitors will hear stories about “the person who tried to do too much. You hear about the person who balanced it well. You hear about the person who maybe even went too far in the direction of rest and withdrawal from normal activities.”

“You hear extreme stories about people thinking, ‘If I have a concussion, I have to go home, I have to stay in a dark room until all symptoms are gone. I can’t even look at my phone or a TV, as if it’s Superman and Kryptonite. And nothing could be further from the truth. In fact, if you put someone in those extreme circumstances — particularly an adolescent, for whom it’s extremely important to stay connected to their peers — you often get a lot of other difficulties you didn’t count on.”

Perhaps the hardest dilemma for parents of a child recovering from a concussion is deciding when it’s safe enough to return to the sports arena.

Eli had dreamed of playing on the high school’s varsity soccer team his whole young life, Friedman says, and insisted on trying out soon after his goalkeeping injury. He made the junior varsity team, but within weeks, she says, he confessed to her that he just wasn’t feeling well enough to play.

She faced the decision: “If I pull him off the team, he’s done. If I don’t, I’m jeopardizing everything: his academics, his possible recovery.” She hopes the Connect2Concussion project will help empower other parents as they make such decisions about what’s best for their children, she says. As for her, she told Eli he was off the team.

“You are staying home,” she said, “and you’re going to recover.”

Davis confesses that he was a bit slower to let go of soccer for Eli; he knew quitting the team would hurt Eli in the coaches’ eyes. But his son helped him along, he says: “At some point, he looked at the two of us and said, ‘I don’t care about soccer. I care about the rest of my life.’ ”

Eli was lucky in that his school, Brookline High School, already had a program to help returning students with medical or emotional problems who can’t handle the full onslaught of a big, hard-driving high school. It offers them a safe and quiet retreat at school, staffed by social workers.

But as Friedman and Davis have been gathering interviews, they’ve heard that not all school systems are as accommodating. In the video above, one mother whose daughter is still recovering describes the resistance she ran into at school.

McGrath and his staff focus some of their efforts on “educating the educators,” he says, helping them strike the delicate balance needed with long-term concussion recovery.

“The anxiety around keeping up in school can get very high, very fast.”
– Dr. Neal McGrath

High school teachers tend to be skilled at holding students to high expectations; but “suddenly, when you have a student with a concussion, we’re asking them to shift gears and expect less of the student for a time — even though he or she may look perfectly healthy — and recognize that too much normal academic activity for some recovering students may cause a real increase in their symptoms.”

It’s not an easy adjustment for students, either, if they’re highly motivated. “The anxiety around keeping up in school can get very high, very fast,” McGrath says. “And that’s where we want the message to the student to be, ‘Look, you can only push so hard right now. We’re going to readjust expectations for you on a temporary basis. We’re going to go at your pace, allow your concussion recovery to happen, and once it does, we’ll get back to all the normal expectations.’ ”

Students may need to hear that again and again, he says.

Through Eli’s high school years, Davis and Friedman became experts on that message, and learned volumes about concussions and recoveries in general. Willy nilly, they became “go to” experts on concussions in their community.

But they’re not in any way trying to replace the individual medical advice of a physician, they say. What they’re creating is called “peer-to-peer education,” which can have a special power all its own — but they filter it through McGrath’s expertise. Also involved in the project is Brookline recreation director Lisa Paradis, who is active in concussion programs nationally.

The team particularly hopes the site will help teens recovering from concussion share with each other. To help build connections, Eli is doing the tweeting and Facebooking.

So how is he doing now?

“I’m normal — I think,” he says. “I haven’t felt any symptoms in a while, not at all.”

And, not to try too hard to make lemonade, but did he learn any valuable lessons from his concussion saga?

“Yes, I learned patience, definitely,” he says. And “I learned how to look at the big picture…”

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