Concussions: One Littlestown family's struggle
Motivational quotes are scattered around Kristin Reed's home in Littlestown.
"Fall down seven times, stand up eight," hangs on the fridge in the kitchen.
"This does not define you, I am not an illness," sticks on a board in one of the bedrooms.
A year ago, Kristin's dream was to play basketball for the University of Maryland. Now, she'd just like a day without suffering from an excruciating headache.
The headaches, which are a result of sports-related brain injuries, Kristin said, sometimes feel like hammers pounding her on the head, or like a rubber band stretched around her brain, tighter and tighter until the pressure is unbearable.
Kristin has had more concussions than many professional athletes: Six. She's only 15.
The high school student is one of the many young athletes in the Hanover-Adams area who are being forced to give up athletic aspirations because of the fear of the fatal effects another brain injury could have.
Concussion specialists are continuing to learn more about traumatic brain injuries and diagnoses have increased in the last decade because of research advances, said Charlie Domnisch, Assistant Director of Concussion Rehabilitation for Pivot Physical Therapy based out of Maryland. Kristin currently seeks therapy at their Littlestown location.
"Awareness and education on the topic is so much higher than it was even 10 or 15 years ago," Domnisch added. "What research is trying to narrow down now is why symptoms and recovery time are so varied from patient to patient. Every patient evolves differently."
Before the concussions, Kristin could enjoy sharing the field or court with her twin sister, Danielle, but now she's relegated to watching a mirror image of herself from the sideline.
But she's not giving up her dream. She's just tweaking it.
Kristin's concussions
The first two concussions came in 2012 while she was playing basketball. In one of those cases, she was wrestling for the ball with another player, fell back and hit her head on the court. A third came in 2013 when a teammate accidentally hit her in a head with a softball bat.
Each time, Kristin popped right back up without shedding a tear.
"There were never any headaches and she was always back in school, or on the court, or on the field the next day," her mother, Stacy Reed said.
Doctors diagnosed the concussions, but no symptoms were evident, Reed said.
Then came the fourth concussion, caused by an accidental elbow to her temple during a basketball game in early 2014. Kristin felt the effects immediately. She didn't know where she was or what had happened, Reed said. That's when the headaches started creeping in.
"I was in a daze," Kristin said. "I had a headache and it just didn't feel right."
A month later, Kristin was participating in a mini-THON at her school when she went to retrieve a volleyball from the bleachers. As she turned around, she felt dizzy, passed out and hit her head.
In January, she lost her balance — a common symptom of traumatic brain injuries, according to the University of Pittsburgh Medical Center concussion program website — and fell down the stairs. Kristin broke her collarbone and suffered a deviated septum.
While she laughed it off, the fall scared her siblings, Danielle said.
"When she started laughing, I wanted to hit her," Danielle joked. "Because I jumped up and started screaming for my mom. I tried to pick her up and I kept screaming."
"Normally nothing phases them," Reed said about Kristin's siblings. "But I've never heard them scream like they did when she fell."
Doctors told Reed and Kristin's stepfather, Kenny Tull, that another traumatic injury to Kristin's head could kill her, Reed said.
Now, family members flinch every time she goes near the steps, or when she bumps her head getting into a car, or when a foul ball comes near them while watching a softball game.
"It's hard watching your child and knowing you can't take their pain away," Reed said. "We had to sit the other kids down and explain to them what can happen if she falls again."
The severity isn't lost on Kristin's siblings.
"At mini-THON, I sat there like a mom, yelling for her to slow down," Danielle said. "We're always nervous."
In April, Kristin hit her head on a window frame at school and immediately started feeling dizzy. The headaches came on right away and she was diagnosed with her sixth concussion, Reed said.
Standing on the sidelines
While there is no permanent brain damage, Kristin's injuries could take two to three years to heal, her mother said. Further down the road, she faces a higher risk of dementia and Alzheimers, Reed said.
And there was more: No sports.
No more softball. No more basketball. No more doing what she loves to do.
Kristin feels isolated and sometimes that can be worse than the physical pain.
She refused to believe sports were a thing of her past. She was adamant she would return to the court and earn a scholarship to play at Maryland.
"Every time we'd walk into therapy, she would ask if they could clear her and they would put it off until a few months ago," Reed said. "Now it's starting to sink in."
Everyday circumstances can be debilitating for Kristin. She has to literally crawl out of bed some mornings because standing up makes her dizzy. She has had to come home early from her brother's basketball games because the bouncing ball triggers more headaches. She leaves school early because the fluorescent lighting hurts her head.
It all reminds her of how far she is from the basketball court.
This season, her sister Danielle stepped away from basketball too. Danielle felt guilty because it was more Kristin's sport.
"I felt bad because she can't play and I didn't want her to have to sit there and watch me play the sport she loves the most," Danielle said.
Danielle put off telling Kristin, because she didn't want her sister feeling bad either.
"I don't want her to stop playing just for me," Kristin said. "I told her that I wanted her to go out for the team because I know it's something she loves too."
'We're not stupid'
Before the concussions, Kristin was an honor roll student. Now, she maintains the grades but struggles to focus and retain information.
"It's a metabolic change throughout the brain so things that the patient could do easily before become harder," Domnisch said. "Things that are as simple as reading become really difficult to do."
She recruits her siblings to help with her homework — except for the Spanish homework, she joked. For that, she turns to Tull. Teachers advised her to drop Spanish in fear that it might be too much, Reed said. That was simply unacceptable, Kristin said, because she needed another language course to get into Maryland.
Most days, she can't stay a full day in school, and Littlestown has allowed her to take a week or two off when needed.
"Trying to comprehend what I'm learning and remember what I've already learned is challenging," Kristin said. "Then the constant noise and instructions makes everything confusing in my head."
Kristin used to be embarrassed about her injury, she said, and wouldn't talk about it. Classmates and even a teacher thought she was exaggerating. A concussion is invisible from the outside, Kristin said.
Classmates poked fun and asked Kristin why she would need to take an elevator if all she did was hurt her collarbone?
"Because they can't see it and haven't experienced it, they would just say that I'm stupid," Kristin said. "I'd just tell them, 'Yeah, keep thinking that.' I knew I could handle it. They just didn't know."
As Kristin's curious teachers and classmates learned more, they encouraged her to ease her way back into everyday school work.
"It's tough dealing with a situation where a student is having trouble retaining information," Kristin's chemistry teacher Nicholas Dowd said. "The biggest thing is to just be patient because you don't really know when and to what degree the recovery is going to happen."
Littlestown High School complies with Section 504, a federal statute with specific instructions on how to teach students with temporary or permanent learning disabilities.
"In the beginning of the year, we spent a lot of time working outside of class just trying to maintain her grade and comprehension," Dowd said. "That has become less frequent as the year as gone along."
It has been a huge help, Kristin said, but there are still comical lapses.
A few months ago, a teacher called Kristin into the classroom after she had completed a test. Kristin had answered true or false for each question. The only problem was that it was a multiple-choice test.
Kristin laughed. She makes light of moments like that with her family and teachers. It helps make thing easier, she said.
Adjusting to a new life
Along with the new quotes posted around the house, the Reed household has seen other adjustments.
After 8 p.m., the Reed home goes into quiet mode — lights out and television volume turned down — while Kristin retreats to her room to scratch together a few hours of sleep, which is made difficult by the anxiety that concussion symptoms cause.
"I'm at my weakest in the morning or at night after all the school work," Kristin said.
The struggle has inspired her.
Kristin wants to help others who are battling similar injuries. She wants them to know they're not alone and they're not stupid.
She's still going to Maryland — to study physical therapy.
"I want people to know it's real and I know how much my therapist and family have helped me," Kristin said. "Now I want to help others."
Every day you know you have to wake up to the same thing. It's hard, but my dream to get to Maryland, my family, my friends, and the quotes have helped a lot," she said.
Oh yes, the quotes.
There is another one that Kristin has hanging up in her room at the top of her quote board: "Whatever brings you down will eventually make you stronger."
Reed family helps others through posts
A small silver lining during the last three years of heartache for the Reed family is that they have been able to help others.
They share stories and experiences on Stacy's Facebook page each day in March, which happens to be Traumatic Brain Injury Awareness Month. Other families going through similar situations have reached out and thanked the Reeds for guidance. Numerous parents have messaged or called Reed and Kenny Tull just to talk about day-to-day concerns, Reed said.
"We were clueless about concussions so we want it out there for people to know about," Reed said. "You only get one brain. It's not like breaking an arm. You can't just fix it and there are never any guarantees."
Mother describes daughter's struggles
Kristin Reed is not alone.
Thirty miles away in Dallastown, 12-year-old Kaeden Babcock has already sustained two concussions. Kaeden and her mother, Gwen, hope they never see a third one.
Kaeden deals with many of the same symptoms as Kristin — vertigo, dizziness, and memory loss — but a week after the second concussion, Kaeden starting have non-epileptic seizures two to three times a day as a result of the brain trauma.
The seizures would last anywhere from five to 30 minutes, Babcock said, and Kaeden wouldn't be able to speak. She would become very stiff and could only respond with nods, Babcock added.
"We didn't have a clue, it blindsided us," Babcock said. "The hardest thing is they feel so isolated. Nobody understands what they're going through. Kaeden was very emotional and depressed afterward."
The seizures have subsided, but Babcock won't risk putting her daughter back into contact sports. Swimming will replace basketball and horseback riding, she said.
"There was no way we could risk it with basketball, but she's all right with it," Babcock said. "She realizes the pain isn't worth it."
Concussion: By the numbers
According to the University of Pittsburgh Medical Center sports medicine concussion program:
-Between 1.7 and 3 million sports and recreation-related concussions occur each year
-Five of 10 concussions go unreported or undetected
-Two in 10 high school athletes who play contact sports will suffer a concussion this year
-Football, girls soccer and girls basketball see the most concussions of all high school sports