Traumatic Brain Injury, Trust your instincts

by georgettejohn

A good doctor never underestimates the power of parental instinct and will take it into consideration when evaluating the health of a child, regardless of the child's age.

Traumatic brain injury is far more common than many people realize and symptoms of it are often unrecognized or attributed to other things. New cases occur every few seconds and it is estimated that every year more than 2 million people in the United States alone sustain a nonfatal traumatic brain injury. It is important to remember that this figure only represents the properly diagnosed cases.

In 2001 my daughter suffered injuries in an automobile accident: fractures, lacerations, and other obvious physical trauma.  She also suffered a Traumatic Brain Injury (TBI).  This was not diagnosed until almost a year after the initial accident. When her personality and behaviors seemed to be different, we were assured it would take a full year for her body to recover from the trauma it had sustained. I remember the frustration of knowing something was “wrong”, only to be told I needed to give her time to fully recover.  Eventually she was medically cleared to return to school and work but I was still concerned. My concerns were discounted and probably because the obvious injuries had healed. To people that did not know her before the accident, she appeared to have made a complete recovery. To those of us that knew her best, her family and close friends, we sensed the difference. She was often frustrated, impatient with herself, seemed far more vocal and “loud” but at the same time she seemed to have difficulty expressing herself verbally. Her emotions would rocket from one extreme to another. She later told me that she felt she had changed but done her best to hide it or compensate for it. She had been frightened and didn’t understand what was happening or why.

After a great deal of research, I was fortunate enough to hit on  This website presented a wealth of information. Within minutes of being in the “chat room”,  I received a great deal of pertinent advice and much encouragement.  It led to a request for a neuropsychological evaluation, another MRI of her brain, and an appointment with a recommended neurologist. Finally the pieces came together and it became obvious that there was indeed another injury that had gone unnoticed by her health care providers. Once the diagnosis was made we were able to initiate appropriate therapies and supports that improved the prognosis for her recovery.

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Mom’s know their children best. We begin this understanding shortly after giving birth. We can differentiate between a “tired cry” and a “hurt cry”. We bandage knees and wipe noses. We can usually tell when they are coming down with something long before the first symptom appears and through childhood we learn what their pain threshold is. Even technological advances have not interrupted this bond of understanding…we often know when they are upset or bothered by something just by the tone of their text message…lol!  (I’ve often called my kids to ask what was wrong because they didn’t sound right and they have responded, “It was a text message! You didn’t hear my voice!” and then they have proceeded to tell me what was wrong! )

All of this brings me to the bit of advice I want to pass on.  It is based on experience and is one of the lessons to come out of this delayed diagnosis: Trust your instincts!  If you feel that something is “not quite right“, pursue it. Research. Reach out and talk to others. Don’t let anyone second guess your instincts or minimize the accuracy of what your heart is telling you until you are absolutely sure it is the right thing to do.

Updated: 02/22/2013, georgettejohn
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georgettejohn on 03/07/2013

Thank you very much Katiem2 and positive thoughts with you as well! How long ago was your accident? Yes, the brain is an amazing thing. I suspect my other daughter had a mild TBI in a bicycle accident as a child because she started having migraines within weeks of the concussion. She is still plagued by horrific ones as well. The difference is, back then I had to knowledge or understanding of TBI. It wasn't until my youngest daughters car accident the reality of it came to my attention. You are a wonderful author...I would never have guessed that you have problems at times with words! Obviously you have worked hard and come a long way which should serve as an inspiration to others with TBI. Thanks for you comment!

katiem2 on 03/07/2013

WOW, what a touching story. I too was in a accident that caused TBI it is a overwhelming struggle to regain the brain function you once knew but it's also amazing what the brain can do once re-taught. I'll keep you and your daughter in my most positive thoughts of continued healing. I understand how it feels to feel the loss of your knowledge and abilities. I sometimes have issues with words, speech and horrific migraines. My kids notice the difference in me and sometimes notice my struggles, they are kind and patience but it is sometimes still a painful process emotionally. It's scary to imagine if you'll ever be yourself again. A great article, my most positive thoughts are with you and your daughter. :)K

georgettejohn on 02/23/2013

Your son sounds like a very determined young man. I am sure he will continue making progress as well and I wish him the best with the tbi.

HollieT on 02/23/2013

I'm glad the injections have helped your daughter's spinal injuries, Georgette. At least when they're young they're a bit more resilient and better progress can be made. My son also crushed the three bones in his hand and ruptured the tendon in his middle finger. He's had a couple of operations on his hand and metal pins have been put in place to replace the crushed bones. We didn't think he'd be able to use his hand properly again. However, a few months after the operations he just suddenly started making progress, out of the blue, and now he has 85% usage of his hand again. So, don't be surprised if suddenly your daughter makes more progress then you have envisaged. I certainly hope that's the case and she comes on leaps and bounds. :)

georgettejohn on 02/23/2013

Hollie, my thoughts are with you and of course, your son. I hope that he gets the proper diagnosis and recovers well. We live in a rural area so had to travel quite a bit for care (which wasn't easy on anyone but especially not on her). I hope that is not the case for your son. It's said that 5 yrs. post accident is the most opportune time for recovery/recapture of skillls/brain "health". She made so much progress in that period of time so please don't get discouraged. At times it felt like such a long road with slow, small improvements but they are all significant when they add up. She didn't need surgery (or continued therapy after the first couple of years) for the brain injury but her spine is a mess. She started receiving monthly injections this past year and they have made a significant difference for her so far but she has also received all her body can manage for a while. Again, I truly hope all works out with your son.

HollieT on 02/23/2013

I can certainly empathize here, Georgette. Exactly one year ago (on the 22nd of February) my son fell 20 ft and fractured his skull in two places. He was also bleeding behind the fractures. He was on a neuro ward for one week and it was touch and go as to whether he'd need surgery. Six months after the accident he started having, what we believe, are petite mal seizures, but we're still waiting to see the consultant for a proper diagnosis.

Brain injuries can go undetected for some time. I'm glad you were able to get your daughter the help she needed.

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