Rewired: Helping Children with Traumatic Brain Injury

by Leslie Hill

Nine-year-old Stevie Wintz stares down the pitches that sail over home plate and is rewarded with a walk to first base. Once safely on the bag, with the sound of “Party Rock Anthem” blaring from another field, he breaks into his signature dance moves – like his whole body is made of Jell-O and he just has to let it wriggle. But as soon as the next batter is at the plate, he is instantly serious, watching the action and ready to run for second.

On the baseball field, Stevie’s personality shines through – a sports lover, a skilled baseball player and a total showboat who wants every eye on him.

But at his next at-bat, another side of Stevie comes out.

His coach tries to give him some instructions from first base, but the words don’t compute for Stevie. A frightening accident three years ago left him with a traumatic brain injury.

“Stevie has no idea what he’s saying,” his mother Gina Wintz explained, sitting on the bleachers. “It’s too fast and too far away.”

Stevie struck out but skipped back to the dugout unfazed.

With a traumatic brain injury, Stevie has learned to live in a confusing world where instructions don’t always make sense.

Difficult to diagnose

A mild traumatic brain injury (TBI) or concussion is a disruption of normal brain function caused by a blow to the head or body that forces the brain to move quickly back and forth inside the skull. TBI can range from a concussion to a more severe injury (with skull fracture or intracranial bleeding) and may affect memory, senses, speech, learning, balance and sleep. An estimated 1.7 million people sustain a TBI annually, including about a half-million children up to age 14.

Usually children heal faster from injuries than adults, but the opposite is true with TBI, and the reasons are unclear. One theory is that a child’s brain is still in the process of maturing, and an injury before its full development may have more devastating effects.

Whatever the reason, the Monroe Carell Jr. Children’s Hospital at Vanderbilt has implemented two innovative programs to help children with TBI. The Brain Injury Transition Liaison Program continues care outside the hospital, following up with families, communicating with schools and recommending resources to help a child recover. Also, the Vanderbilt Sports Concussion Center has streamlined care for young athletes, giving them the same state-of-the-art treatment as Nashville’s professional players.

But identifying a TBI can be complex.

The most common symptom is headache, present in about 80 percent of patients. Other symptoms include amnesia, difficulty concentrating, tiredness, trouble sleeping, moodiness, nausea, vomiting, dizziness, fogginess and lightheadedness.

“The symptoms are vague and can easily be attributed to flu or other illness, and many of these patients are teenagers that are already moody,” said Andrew Gregory, M.D., assistant professor of Orthopaedics and Pediatrics, who treats young athletes with concussion in the Vanderbilt Sports Medicine clinic.

A mild TBI is not visible on a typical brain scan, making diagnosis more difficult. Sometimes children with TBI fall through the cracks of the medical system, and families may go without knowing what is wrong.

Ninety percent of mild TBIs bring only temporary symptoms, resolving within a week. Ten percent have a longer recovery period, including a very small number with permanent impairment.

“It’s very unlikely that a concussion will have any lifelong effects for a child,” Gregory said, “but it’s important to recognize what a mild TBI is and get evaluated to know when it is safe to return to activity to prevent further injury.”

Making the connection

It was a hot summer day in late July 2008 when Stevie sustained his TBI. Then 5 years old, he and his older brother, Joey, were restless and bored inside their Kingsport, Tenn., home, so Stevie went to the shed connected to the outside of the house to grab a basketball. The solid wood door, swollen and rotted, was stuck but Stevie continued to pull. Finally, the whole door, hinges and all, detached. Stevie fell down three steps and hit the concrete, with the door landing on top of him.

“I always say I’m so grateful for those three steps because he had time to scream,” recalled Stevie’s mother, Gina Wintz. “I ran outside, and only saw part of his foot sticking out under the door. His Crocs (shoes) were scattered around the yard.”

A 55-pound, 46-inch Stevie was lying under a 150-pound door. With a surge of adrenaline, Wintz threw the door off of Stevie and found him unconscious underneath.

“There was no blood but his head immediately began to swell. It was no longer in the right shape, and it was turning black and blue quickly,” she said.

At the local hospital, Stevie had a CT scan, but it showed no skull fracture or bleeding in the brain. His arm was broken, but doctors did not find anything else wrong.

“They watched him and gave him popsicles and said he was going to be fine. I was happy but yet confused because it seemed like we had just been through so much,” Wintz said.

At first, Stevie seemed to be healing fine, but then Wintz began to notice problems with language and mental processing.

“Physically he was still very athletic but I could tell he was struggling mentally. I remember one time we were watching SpongeBob (SquarePants) and he just started crying. He said he couldn’t understand it because everyone was talking too fast.”

Wintz had been looking forward to Stevie starting kindergarten, possibly on the gifted track. But after the accident, he was tested for special education, scoring 62 on an IQ test. A school psychologist started asking questions about Stevie’s accident, finally making the connection between the accident and a traumatic brain injury. It had been more than six months since the accident.

Stevie struggled in school. Eventually, he moved to a general education classroom with a teacher’s aide. Wintz, a teacher herself, knew Stevie needed special accommodations but neither she nor Stevie’s teachers knew what was best.

Getting help

Many families face the same uncertainty when a child with TBI is sent home from the hospital. To give more support as children transition back to school and activities, the Children’s Hospital partnered with Project BRAIN, a statewide brain resource and information network, to create the Brain Injury Transition Liaison program.

“It’s a safety net. Most kids with TBI are going to be OK, but we’re there for those who aren’t and can connect them with whatever resources they may need,” said Jahnil Ancheta, B.S.W., Project BRAIN team member and Children’s Hospital’s first Brain Injury Transition Liaison.

In the Emergency Department, nurses give families an information packet with contacts and a TBI signs and symptoms tool. With that tool, parents can monitor for TBI symptoms. Parents can also consent for the Transition Liaison to follow up with either just the family or with the family and the child’s school.

“I’ll call the family two weeks, three months and six months post-injury to touch base,” Ancheta said. “A lot of times the kids are doing really great and I just remind them to look at the signs and symptoms tool and keep that in mind over the next few weeks. In a few cases, the child is having problems in school with focus and behavior, and I’m able to connect them with every resource available.”

The program is the first of its kind in the nation, and is now being replicated at LeBonheur Children’s Medical Center in Memphis. Since May 23, the program has reached more than 122 families.

“Vanderbilt really wrapped its arms around this outreach ability. It’s the next extension, a continuation of care for our children,” said Paula Denslow, director of Project BRAIN, which created the Brain Injury Transition Liaison Program in collaboration with Children’s Hospital. Project BRAIN is a program of the Tennessee Disability Coalition and the Tennessee Departments of Health and Education.

It’s the integration with local schools that makes the Brain Injury Transition Liaison Program so unique.

With parental consent, a letter from the Tennessee Department of Education is sent to the child’s school, along with a signs and symptoms tool.

“That is where these children spend a large amount of their time, where you can recognize deficits easily, and where children experience most of their cognitive or behavioral problems,” said Kate Copeland, R.N., B.S.N., C.P.N., interim director of Emergency Services.

“Teachers are often the first to notice a child’s deficits but many times they are assumed to be a developmental problem or just typical teenager behavior, and not related to the head injury. With some education, the teacher can connect a child’s behavior – blurting out in class or being completely dazed – with the head injury.”

Not knowing

Gina Wintz felt completely in the dark regarding Stevie’s TBI.

“When kids have the flu, they have the same signs – fever, runny nose, sore throat. But brain injuries aren’t the same at all. I had no idea what I was dealing with,” she said.

Stevie has trouble with reading and will skip over words on a page. He also has trouble concentrating, often misidentified as attention deficit disorder (ADD).

“If I need to tell him something important, there can be no other distractions,” Wintz said. “When he’s showering he gets lost. We go over the sequence of what to do, but sometimes I find him just standing in there. Often he can’t remember words and will have to use other descriptions for that word.”

Stevie is a very bright and clever child, but the wires in his brain just aren’t making connections. He has struggled in school because instructions will be given too fast for him to comprehend, or he will misunderstand directions on a worksheet.

“The biggest struggle Stevie and I face at this stage is when others don’t understand,” Wintz said. “If he makes a mistake because he didn’t comprehend the directions and then he is reprimanded because he should’ve known better, it just crushes him. I pray there is a day when he can say he has completely overcome this accident and the injury.”

This summer, Wintz found the help she was looking for after her family moved to Murfreesboro. She was talking about Stevie’s injury with another mother on his baseball team who happened to work in the Children’s Hospital Emergency Department and knew about the Brain Injury Transition Liaison. Wintz called immediately.

“I’ve learned more in the last month after connecting with them than in the last three years. Two people from the program are coming to his school to advocate for Stevie and adjust his education plan,” Wintz said. “The hardest part of TBI is the ‘not knowing,’ and the more I learn, the better it gets.”

Taking it slow

The science of a TBI explains why school, especially language and math classes, are difficult for children with TBI.

The scientific term is “metabolic mismatch.” Basically the brain needs more energy, through its blood supply, to heal after an injury. But the brain automatically decreases its blood supply, probably as a protective measure.

“The brain needs more energy, but it is getting less,” Gregory said. “Activities like exercise, school and screen work will aggravate symptoms because you’re trying to use a brain that isn’t functioning very well.”

Treatment is simply to avoid anything that may trigger symptoms, including school, physical activity, and TV and computer screens, and wait for symptoms to improve.

The key with TBI is quick identification and evaluation, and Gregory said the new Vanderbilt Sports Concussion Center has streamlined that process.

Evaluation is so critical because if young athletes returns to play before their concussion has healed and sustains another concussion, it can have devastating consequences.

To assist evaluation, the Sports Concussion Center offers ImPACT (Immediate Post-Concussion Assessment and Cognitive Testing), a computerized concussion assessment system. ImPACT tests several factors including reaction time, visual and verbal memory and processing speed, which can be compared to a baseline test to track an athlete’s recovery and assist in determining a safe time to return to play.

More than 2,100 Metro Nashville Public Schools football and soccer players were tested before their fall 2011 season began. The Sports Concussion Center averaged eight to 10 post-injury tests per week during the peak sports season. The Center is initially targeting athletes in contact sports with the eventual goal of testing all MNPS athletes each year.

Patients take a slow, stepwise progression to recover from a TBI and know when it is safe to return to activity. First, a patient must tolerate full days at school. Then they can try light activity, like jogging, followed by practice drills. Then they can return to practice without contact, and if no symptoms have returned, they are cleared to return to competition.

Making a full recovery

“Say the months of year backwards starting with July.”

“July, June … August,” then a long pause. “This is really hard.”

Sixteen-year-old Amanda Torrez is being evaluated by Gregory in the Vanderbilt Sports Concussion Clinic. She’s about a month out from getting a concussion after heading a soccer ball.

Amanda aces the other neurologic tests – identifying the next major holiday, running her heel down her shin, touching her nose then Gregory’s finger as he moves it around, sticking out her tongue, walking a straight line with eyes closed – but it’s clear her memory isn’t quite there yet.

“It’s not time to go back to practice because strenuous

activity can make this worse. I’m OK with you trying some light activity – walking the dogs and jogging on the track – but stop if you feel worse,” Gregory said.

On Aug. 22, Amanda, who plays soccer for Nashville Christian School, did a header as her opponent threw in the ball. The ball hit the top of her head instead of the front. She felt dazed and saw stars, but kept playing. Then she began dry heaving and was pulled from the game.

“That night I couldn’t sleep at all. I had weird dreams. They were really scary and it was the first time I called for my mom in a long time. The next day at school I could barely keep my eyes open,” Amanda recalled.

For about the next four weeks, Amanda had dizziness, blurred vision and memory loss, plus a relentless, banging headache.

“It hurt where I got hit and the pain felt like a helmet around my head. It was a lot more intense than a normal headache.”

She couldn’t tolerate school and had to lay in bed with no TV or texting – very hard for a teenager.

“Some days I would wake up and the headache wasn’t there. I would get excited and get dressed for school, then the headache would come back and I would have to lay back down,” Amanda said.

Amanda went to school on alternating half-days, and really saw her deficits in Spanish class. She is in her third year but couldn’t remember how to say the simplest phrases. When she could tolerate full days, she was able to adjust her schedule to make up all the work she missed.

“She has a delightful, outgoing personality, and the concussion affected that dramatically,” said Donna Torrez, Amanda’s mother.

“She is constantly laughing but it made her more reserved and quiet. She cried and slept a lot. She was not herself at all and there was this scary feeling she would never be the same again. We knew we just had to wait but there was no way to say how long the symptoms would last.”

At her appointment with Gregory, she had been to school for a full week and was hoping to be cleared for physical activity, especially getting back to being the football team’s water girl. But memory was clearly still an issue.

Torrez mentioned that Amanda had studied for a history test last week and really felt she knew the material but still failed the test.

“The important thing to remember is this is not your fault. You’re not dumb; your connections just haven’t rewired yet,” Gregory said. “Resting and waiting will make that better. The worst thing we could do is put you back in the game and get you hit again. There’s no doubt you’re better and you’re getting close, but you need a little more time.”

Torrez could tell Amanda was on her way to a full recovery based on how she responded to the memory test.

“The fact that she can laugh about not knowing the months of the year is a good sign. Before she would have been bawling about how badly she did. It’s much more her personality to laugh about it,” Amanda’s mom said.

Gregory cleared to Amanda to get back out with the football team and said she could take the ImPACT test with Nashville Christian’s athletic trainer, Jonathan Vieria, when she felt ready.

Amanda won’t be back on the soccer field this year, but hopes to be ready for her senior season next year. She just doesn’t plan on doing any headers.

For more information, visit www.childrenshospital.vanderbilt.org/sportssafety.