My son’s journey to the discovery of his diagnosis of post-concussion syndrome has been a lengthy one, and we know that the journey is far from over.
Travis’s Grade 10 year began in September 2010. He was in the academic stream of classes, and was eager to get back to school and see his friends that he had lost touch with over the summer. His schedule included an afternoon class of Ultimate Fitness—a “ramped up” version of Phys. Ed. including cross training and weight training designed for advanced athletes. He was a member of the Junior Football team for his school, which meant he immediately began two-hour practices after school. Adding to his schedule was his involvement in tryouts for the travel hockey teams within our local minor hockey league. At that point Travis had been playing hockey for nine years, the last seven of which he played at the AE Travel level. In those first weeks of school his typical day included the 70-minute fitness class followed by a minimum two-hour football practice, with a weekly minimum of four hours of ice time for hockey practice.
Travis’s health issues started in late September. He would wake up feeling nauseous, or would have a headache. He would often stay home for his first morning class and then try to get to school in order to finish out the day so he could attend his fitness class and football practice. He couldn’t miss too much school or he wouldn’t be allowed to play in the games. There were days when he couldn’t manage to stay at school despite his desire to be there. Nausea and stomach pain seemed to be the main symptoms—not constant, but enough to keep him out of school for at least one day, sometimes two, per week. A visit to our family doctor in early October led to a diagnosis of gastroesophageal reflux disease (GERD), which was suspected to be causing the pain and nausea. We left with a prescription and the hopes that this would resolve his issues; the plan was to return in a month for reassessment.
The follow-up with the family doctor led to the first of many rounds of blood work as Travis was still not well. It was recommended that he increase his dosage of the GERD medication and hope for some improvement; consideration was given that it could be the beginning of an ulcer. By mid-November, Travis was struggling to stay in school for more than half of his regular schedule and his marks were dropping as a result of his poor attendance. He was falling behind in his school work, but he always managed to make it to his hockey games. Quite often he would have difficulty getting out of bed the day after he played, but I attributed it to the lateness of the game coupled with him not feeling 100%.
During this time, Travis took a mid-sternum hit in a hockey game. The hit knocked the wind out of him and sat him down on the ice, but he got up and skated to the bench. It was near the end of the game, he sat out a shift or two, tried to go back out but then shortened his shift and came off, finishing the game on the bench. The focus was on the hit to his chest and the pain that it caused. The thoughts of concussion never crossed our minds as he never hit his head. The doctor that assessed him in Emergency was given the history of his health issues in the months preceding the visit, and did ask if Travis had hit his head in the incident. X-rays revealed that there were no broken ribs or sternum, so the injury was assessed as a bruised sternum. He was informed that it was going to hurt as much as if it was broken and we were sent home and told he could return to hockey when he felt ready. After a day or two of resting after the injury, Travis attempted to go to school. He called me from the school after his first class in tears, telling me that he needed to go home. Sadly that is the last day of school that he attended that semester.
During this time his appetite started to diminish. He had always been a good, healthy eater, but now he was finding that a lot of things he ate made his stomach hurt even worse. He was eating mostly applesauce, yogurt and toast and was losing weight. Back to the family doctor’s office for a follow up, this time to a new doctor that was filling in for a maternity leave. So the story is told all over again, stressing that just over 2 months before this kid was extremely active and fit, playing hockey, football and participating in ultimate fitness class, now this same kid can’t even go to school because of the nausea and pains in his stomach. The diagnosis was leaning heavily on ulcers or gallbladder, despite not fitting the full profile for either, so another round of blood work and referral was made to a gastroenterologist. Travis’s initial visit to the specialist was shortly before Christmas and was very disheartening. Again the story of how vastly his life has changed, how his appetite and weight was diminishing, how he would spend hours in bed and still be able to sleep all night – I am feeling like a broken record, but knowing that there is something definitely wrong with my son. During the interview with the doctor, my son was questioned about whether he uses illegal drugs, which my son denied and which I could confidently attest to, but the doctor still seemed inclined to believe that was the issue. I believe that was the first time that Travis felt that he wasn’t being heard. The doctor scheduled a colonoscopy and gastroscopy in order to rule out any issues, but he really didn’t think that he would find anything. His final words to Travis when we left his office were “Go to school, and stop making your mother worry”
After Christmas, with exams approaching, the vice principal of his school arranged for a tutor to come to our home to assist Travis with hopes that he could get a credit or two out of the semester. He diligently worked with the tutor and was successful in getting two credits. Travis was very interested in attending his drafting class in the second semester. He made great efforts to get there and at midterm had a mark in the high eighties, but unfortunately he was unable to stay in school for the remainder of the day. The tutor continued to come to the house 1-2 evenings per week to assist with his other classes.
The scopes showed nothing. More blood work. An abdominal ultrasound was ordered to check his gallbladder. There was evidence from the blood work that Travis had mono. The ultrasound indicates a slightly enlarged liver and pancreas – possibly from the mono, maybe from the stick to his sternum, no real explanation. Further tests, further speculation. But the symptoms continue – the stomach pain is lessening, he is back to eating normally but the lethargy continues, and Travis senses that there is something wrong. He just doesn’t know what it is. I recall a time when we were sitting around at a family dinner, talking and laughing about some childhood prank. I watched the colour drain from Travis’s face. I thought he was going to faint. He immediately got up and went to his room to lie down. He later told me that he was having sharp pains in his stomach, began seeing flashes of light and he thought he was going to pass out. At one point Travis was told that sometimes people just “have” stomach pain and they have to learn to live with it. Then teenaged depression was considered as an explanation. Travis is and always has been reluctant to take anything that could become addictive, so wasn’t keen on taking a mild anti-depressant, but he did. Something, anything to make this go away and for him to return to normal.
It was the first week in June 2011 when I was encouraged to attend a seminar that was being presented on concussions in sports that was sponsored by a nearby AAA hockey centre. A relative had attended a similar venue a few weeks prior and the testimonial given by one young man, sounded similar to what my son had been experiencing. Listening to the testimonials brought tears to my eyes. I finally KNEW what was wrong with my son. I approached Dr. Echlin after the presentation and told him that I really thought he needed to see my son. Travis’s first appointment was June 28thand it changed our world forever. Travis was diagnosed with Post Concussion Syndrome, secondary to repetitive brain trauma. After 10 months of nausea and pain, 5 doctors, and a multitude of tests, we at least had a diagnosis. It was like a weight was lifted from him. I asked Travis on the way out of the office how he felt – his answer “I feel so much better about myself, I was starting to think that I was going crazy”.
Having a diagnosis was just the beginning of the next chapter of Travis’ story. The realities of what his day to day life had become now required significant change. As we had been living through the “unknown” stage for the previous 10 months, Travis had started to rely heavily on the internet and TV to keep him occupied. He had used money from Christmas gifts to purchase a PS3 to help fill in the days when he couldn’t go to school. This was a way that he could remain “in touch” with his buddies and feel like a normal kid even though he was so isolated by his pain. We now know that the electronic stimulation was likely the worst thing for him, but at the time we had no idea we were dealing with a brain injury. Upon diagnosis, Dr. Echlin recommended an electronics ban for a few weeks in order to allow Travis’s brain to rest. No TV, no computer, no videogames, no texting, everything that a typical 15yr old uses to communicate was taken away from him. Travis was mature enough to recognize that he needed to do this, so he packed up his PS3 and took it to a friend’s house to remove the temptation and had his cell phone deactivated. He was encouraged to avoid anything strenuous and spent the better part of the month doing very little. When we returned to see Dr Echlin at the end of that month, his assessment numbers had improved but still had a long way to go.
After discussions and review of medical history with Dr. Echlin, I have come to the conclusion that Travis’ concussion issues stem back to a known concussion in December 2008. He was assessed in our local emergency room after the game and was sent for a CT scan to determine the extent of injury. Unfortunately at that time, we were without a family physician. A call from the emergency room nurse confirmed the suspected concussion following the CT Scan and we were advised of treatment. We followed all the proper steps in treatment, took the required time away from sports (3 weeks), returned to the emergency dept for follow-up and clearance to return, and slowly integrated back into the game, first with no-hit practices, then regular practice, then game, as per protocol based on OMHA Trainer’s guidelines. Dr. Echlin has explained that a percentage of concussion patients have cumulative effects, and we have come to determine that Travis is part of that percentage. In the years that passed since this known concussion, I suspect there were many minor hits that have had greater than anticipated impact on his brain. Because of his large size (6’5” & 220lbs) he was often a target in competitive play, regularly adopting the role of protector of his smaller team-mates. Travis was not one that would voluntarily pull himself out of the game and would have “shook it off” like most athletes try to do. While I do not recall any major hits that led to any downtime, I do know there were hits that would cause him to sit a shift to catch his breath, but he always was willing to play on and never gave indication that he was hurting to his coaches or to me. The cumulative effect of these repeated injuries has been continuing to push on a bruise that has never fully healed. In November 2010, his body finally got the message through to him that he had to stop the assault on his brain. Unfortunately it was a long, difficult journey to actually reach the diagnosis.
In the five months that have passed since his diagnosis there have been many difficult days. A large part of this journey to healing is emotional. The reality of losing the things that had defined him – hockey, football, school and the social groups that are affiliated – is very difficult for a 15 year old to accept. There have been several occasions when he has woken me in the night because he is unable to sleep, his tearful question of “Why can’t I just be normal again?” or “When is this going to go away?” breaking my heart. As a parent how do you make this go away? His emotions have been rubbed raw. There were times when his anger over the situation was very evident, other times it would take a trigger to release his fury. While he has never been physically violent with any of us, his verbal assaults can be hurtful. As time passes we are learning to gauge his moods and know when it best to try to get him to talk vs giving him some space to work through his emotions, and he is becoming more aware of his moods and is better able to control them.
While his involvement in various sports was never something that would take him to the “big leagues”, it was something that was a very big part of our lives. For years our family life had been dictated by hockey schedules – home and away games, travelling, socializing with the team members and families, weekend tournaments etc. Now life is much quieter. The people that were once regularly part of our lives have moved on, they are still busy in hockey and the commonality has been lost. While I miss those ties, I am reluctant to attend the local games to support his former team, for fear of causing Travis to feel responsible for taking that part of our life away. Our local hockey organization has failed to recognize the occurrence. In all fairness had there been a recognized “trophy” hit with immediate concussion diagnosis, there may have been greater recognition, but because of the gradual withdrawal from life, and the delayed diagnosis there has been none. This does create some feelings of disappointment for me, due to my previous years of involvement in the organization, but there is no ill effect to Travis and that is what is of greater importance. His issues are more with his peers and with the pressure that he places on himself.
While we had hoped that he would be able to integrate back into school this fall, it has proven very difficult for him. He was excited to go back and hoped that the summer of isolation was behind him, but it was not meant to be. He was able to attend 2 days in the first week of school and was plagued with headaches. I realize a large part of his pain is emotional. Those first few days of school the focus is on the tryouts for football and hockey, which he knowingly cannot participate in, but that doesn’t stop the questions from his peers. He looks fine physically so why wouldn’t he play? Then the taunting from those that do not understand begins. It is easier to withdraw from that environment than to explain over and over again. This has been a period of determining who his true friends are, a difficult process for a 15 year old to experience. The school administration and his teachers have been supportive and are learning more about this health issue along with us, but there are still hurdles to conquer on a regular basis. It is difficult for most to understand the mental and emotional drain that this places on the patient. We have often said this would be so much easier if there was a cast or crutches – those outwardly visible signs of health issues that allow society to accept that an individual is not well and cannot be held to the same expectations of others.
As fall has progressed, Dr. Echlin has encouraged Travis to start slowly reintegrating himself back into school and has provided the school administration with the required documentation to allow attendance and testing expectations to be lifted for him. On good days, Travis will go to the school and meet with his friends for lunch. This is intended to relieve the isolation factor that is so prevalent. The hope is that Travis will slowly start adding class time in. The school administration has provided options for learning strategies that will hopefully allow Travis to regain his credits over time. At times he struggles with his ability to concentrate, and often repeats himself unknowingly but this is improving as time passes. One of the greatest challenges he faces is in not stressing over the situation. A difficult task for all of us, but we have had to adapt to a “one day at a time” mentality surrounding Travis’ recovery – celebrating when the days are good and encouraging when they aren’t. We know that with Dr. Echlin’s guidance we will get back to a place where Travis can successfully move forward with his life. His future plans are to finish high school and proceed onto university. He knows he will have to leave impact sports behind, but hopes to get back into strength training and cardio activities to balance out the athletic side of his life. While we don’t know the length of time that it will take for him to achieve his goals, we do know that the path will eventually lead to success.