Ignored, Dismissed, and Misdiagnosed: Eight Things Every Parent Should Know About Traumatic Brain Injury
Traumatic brain injuries (TBIs) can be devastating. When a person suffers a blow to the head—due to sports injury, military combat, a car crash, a fall, a violent attack, or some other accident or event—it can alter his or her brain function and behavior. For some, the change is temporary. For others, it never goes away. And for some, whose injuries remain unidentified and untreated, it can set off a spiral into depression, substance abuse, criminality, homelessness, or—most tragically of all—suicide.
Yet, as dire as TBIs can be—and as common as they are (1.7 million per year, estimates the CDC)—there’s a shocking lack of knowledge and resources around them.
I know firsthand how life-shattering unidentified TBIs can be. And I also know how ill-equipped our healthcare system, education system, and the public in general are to detect, diagnose, and treat them. This has to change. Our children deserve better.
My new book A Call to Mind: A Story of Undiagnosed Childhood Traumatic Brain Injury tells the story of my son, Luke, who suffered a closed-head TBI at a park playground at almost three years old. As my husband and I were spreading out blankets by the pool, we took our eyes off Luke for a few seconds. He darted away and into the descending arc of a child on a hard plastic swing. It struck him on the head and sent him flying. As I rushed to him, I feared he might be dead. He wasn’t. But he was forever changed.
The child who ran away from that blanket never returned to me. I waited, hoped, and prayed for the next 17 years, but he was like a different child.
Luke was visibly dazed from the blow. But because there were no other obvious signs of concussion or external injury, the pediatrician advised against an emergency room visit. But even as my family waited out the recommended 24-hour observation at home, it was clear to me that something was seriously wrong. My happy-go-lucky little boy had transformed into an anxious and easily agitated child.
As the days went by, Luke’s brow never unfurrowed. Suddenly, he was fearful of going to bed. He clenched his fists and shook his arms in what were later (much later) diagnosed as mini-seizures. And as he grew up, different symptoms appeared. He complained of noises in his head. He experienced synesthesia. He got “stuck” in thoughts he couldn’t move through. He struggled in school (despite his high IQ). He became socially isolated. He began to act out impulsively, and, eventually, depression set in.
Throughout his childhood—and despite my many pleas for help to physicians and teachers and my certainty that my son’s problems stemmed from his playground accident—Luke wasn’t diagnosed with a brain injury until he was 18 years old. By then, years of psychological overlay, frustration, and shame had taken their toll. When he finally lost all hope, he bought a gun, put it to the exact area of his head that had suffered the injury, and pulled the trigger.
No one ever gets over the death of a child. Yet in the wake of this terrible loss, I have been determined to raise awareness for others about the scope and impact of unidentified TBI, especially closed-head injury. I want physicians, educators, psychologists, family, friends, and, of course, parents to better recognize how a TBI can manifest so it can be identified and treated as soon as possible. I weave through my son’s story all manner of symptoms that, in retrospect, should have been recognized as brain injury soon after initial impact. Because medical and educational professionals can easily dismiss what cannot be seen, I hope parents will learn through Luke’s story what those TBI symptoms might be, and to stand their ground with doctors and teachers when their children change after a blow to the head.
Here, I offer the following insights and advice for parents:
Take every bump on the head seriously. There may be no marks or immediate signs of a problem but that doesn’t mean there isn’t one. If your child loses consciousness, even briefly, or seems dazed and confused, vomits, or shows unequal dilation of the eyes, seek medical help right away. Also, be aware of any other unusual behavior—for instance, Luke didn’t cry, which is not normal for a toddler—and don’t try to explain it away.
Teach your child to tell you every time she has a bump on the head. This will alert you to be on the lookout for anything that seems “off.”
Make sure your child’s doctor takes them seriously as well. Many physicians lack a precise protocol for diagnosing head injuries, so parents need to understand what the issues are. If you’re seeing worrisome symptoms in your child and your pediatrician doesn’t order appropriate testing and follow-up, you may need to seek emergency or urgent care to have your child assessed.
“The blow to the head, accompanied by changes in Luke’s behavior, should have triggered advice to take him to the ER to determine the nature and extent of the injury,” confirms Wayne A. Gordon, PhD, ABPP-CN, Jack Nash Professor and Vice Chair, Department of Rehabilitation Medicine, Icahn School of Medicine at Mount Sinai, who wrote the foreword to A Call to Mind.
With all the news around head injuries in the NFL and military, there’s a growing awareness of how serious a bump on the head can be. As a result, physicians are hopefully more open to parents starting the conversation around head injuries. My advice to parents is simply this: Don’t give up until you are satisfied with the physician’s response, and until that response matches your level of concern.
Be aware that many TBIs go undiagnosed. Many TBIs remain undiagnosed because physicians don’t believe the parent’s report of behavioral, emotional, or physical changes in their child. They might not believe what they can’t see, or they might initially diagnose a concussion, but then dismiss a parent’s observations of lasting changes, assuming the injury has healed.
Also, parents may notice changes in their child but don’t realize that he fell off the monkey bars at school (or, they realize it but don’t connect the strike to the head with the subsequent symptoms). The bottom line? If your child is having unexplainable and confusing symptoms, get her checked out.
For example, one of Luke’s symptoms was perseveration, meaning that he would get stuck on a thought or action and could not be redirected. This kind of behavior is common with some types of brain injury, but a physician might dismiss it as simply a bratty episode.
Know that brain scans don’t always show a TBI. Sometimes, evidence never shows up on a scan. If your child does have a scan after a strike to the head and it appears to be clear, don’t take this as proof that nothing is wrong. There are neuropsychological tests that can be administered that provide as much or more information than a scan.
When Luke was finally diagnosed, the physician ordered a SPECT scan. He told us, “Nothing may show up, but don’t think for a moment that this isn’t a traumatic brain injury.” It turned out the scan did show evidence—his case was a bit beyond mild—but it was the evidentiary info I shared with the physician that served as his diagnostic evidence.
For treatment, time is of the essence. The earlier your child’s TBI is identified, the better. He will then have the help he needs in school, and his peers and family will be taught to understand and to be his support system. And while it’s never “too late” to treat a head injury, any delay can be damaging, so seek help as soon as you realize there may be a problem.
Parents must be incredibly persistent, and doctors and educators open-minded. Woven throughout A Call to Mind is the continual unfolding of unexplained changes in my son. I shared my observations many times with professionals who should have been trained to know there was a problem, and yet I was ignored again and again.
What can’t be easily seen by doctors and teachers is too often dismissed. The signs of a TBI might not be the “obvious” ones that physicians look for during an exam. They might look like social issues, laziness, or manipulation. Or they may look like some other problem depending on a specialist’s area of expertise. (Consider the adage “When you have a hammer, everything looks like a nail.”) Parental observations of unexpected changes in the ability of a child should be given far more credence than they currently are.
I recently attended a conference at a major medical school, and a physician was speaking on how to assess TBI in the Emergency Department. There was a list of medical criteria to consider, but number one on the “What to Ignore” list was parental observation! And when parents are ignored often enough—or worse, blamed for their child’s failures—they’ll eventually avoid addressing these issues of concern. Self-doubt can set in when parents are blamed continually.
TBI may masquerade as a behavior issue. Luke exhibited unexplained delays in emotional maturation, behavioral outbursts, and social difficulties. All of these were clues that, had they been connected to his history of having had a blow to the head, could have led to an earlier diagnosis. Instead, no one ever connected the dots (despite me constantly referencing the playground incident). As a result, Luke became socially isolated, and I was judged and blamed by physicians, teachers, and even friends and family.
Luke’s episodes of fist clenching were eventually recognized as seizures, yet they were interpreted as fits of rage for years. I was even accused by a preschool teacher of being an abusive parent. Luke’s agitation during one doctor visit caused him to run wildly around the room, which led to his being labeled a behavior problem. “You just need to be a better mother,” the doctor told me, despite having been told we were there because Luke had not returned to “normal” after the playground accident. These problems should have been recognized as physical signs of a brain injury.
The effect of TBI might not be immediate. Children often “grow into” their injury as they access different parts of the brain at different ages. For example, when Luke grew into the need for executive brain functioning—such as planning, flexibility of thought, self-awareness, impulse control, organization, time management, working memory, and self-control—he suddenly couldn’t complete higher-level assignments or read higher-level books.
Parents need to ask themselves, Why are previous As turning into Cs and Ds? Don’t assume the child is just lazy or a “screw up,” as Luke called himself. Think back: Did my daughter experience a hard bump on the head when she fell down the stairs? Could my son have had one we didn’t know about? Never rule out brain injury, even if professionals do. Keep trying. Keep searching for answers. Keep insisting.
This advice—keep insisting—runs through the book and my speaking engagements like a mantra.
If I had it to do over again, I would have stood in front of the pediatrician, the pediatric neurologists, psychologists, and Luke’s teachers as many times as it took to make them believe me.
If our lives are just stones across the water, I want Luke’s ripples to go far. I want them to touch the lives of other children and adults like him who suffer from TBI and struggle to live functional, fulfilling lives without self-blame, and with a belief in good things to come. I hope that by sharing Luke’s story, you, your patients, your students, your constituents, and your loved ones will find the help they need so their stories can have happier endings.
About the Author:
Claire Galloway is the author of A Call to Mind: A Story of Undiagnosed Childhood Traumatic Brain Injury. She has been advocating for greater awareness of closed-head traumatic brain injury in children since 2008. She has spoken at several brain injury conferences and to students of education. This is her first book. She resides in Virginia with her husband, Mark. For more information, please visit www.acalltomindtbi.com.
About the Book:
A Call to Mind: A Story of Undiagnosed Childhood Traumatic Brain Injury (Brandylane Publishers, 2017, ISBN: 978-1-939-93094-1, $16.95, www.acalltomindtbi.com) is available at bookstores nationwide and from all major online booksellers.