Gearing up for school
As a parent you know those crazy weeks before school: shopping, pediatrician, dentist, optometrist, audiologist, neurologist, neuropsych, chiropractor, CST. (Well, maybe ours was crazier than most!) The quirky news of the week was from our optometrist, Dr. A., who is very thorough and research-oriented: he found discrepancies in Heidi's visual convergence (ability to coordinate her eyes at certain distances) and in her field of vision, attributable, he said, to her brain processing (not the physiology of the eyeball) and likely caused by the concussion. He was concerned but not alarmed, and asked us to return in November for follow-up. I was more concerned because, as Heidi's symptoms had improved, we had allowed her to get her driving permit. Now what? At least at boarding school she would have no chance to get behind the wheel.
As Heidi began to focus on packing for school and organizing her notebooks, she could feel her symptoms returning: the headaches, fogginess, and fatigue. Chastened, we worried that the apparent progress of the summer would be transient. However, the final ImPACT prior to classes performed by Dr. Moser on September 3, 2010 showed a mix of stable and improving indicators. I faxed the results ahead to the dean (just in case).
We met again with her Connecticut sports doctor on September 8, the day before classes began. Heidi was still prohibited from contact sports. A ballet class would satisfy her athletic requirement, and the doctor agreed to allow her onto the fields to manage the field hockey squad. A check-up with the concussion specialist in Boston on September 15 provided a satisfactory progress report one week after classes had begun, although Heidi had confided her concerns about her recurrent symptoms on the drive up from Connecticut.
It would have been nice if all had gone smoothly back at school, without accommodations. It actually wasn't too bad compared to the spring term. Heidi was functioning reasonably well, but her morning fogginess and afternoon headaches had returned. Her emotions were as well-controlled as could be expected for any teenager, maybe better. Not too much drama. Her classwork was very much up to par, with the possible exception of Honors Physics, which met in the mornings when she was still foggy.
The PSAT test in October, though, was terrible. We elected to avoid an early junior year SAT test session, choosing to bide our time. Heidi's older sisters had taken early SATs to assist in the college application process, and for athletic recruiting purposes. For Heidi, an extended testing session of that sort was out of the question.
She moved over to the sound crew for the drama club (Wait, you say? Yes - the deaf kid became a sound tech!) No symptoms worsened, but further improvements were not very obvious. She was still doing the humble Epsom salt therapy.
As the end of the fall term drew closer, the issue of a winter sport came up. Heidi knew she couldn't play hockey, but she didn't want to manage on the bench; the assistant JV coach was pushing for her to be a student coach, on the ice. That decision was postponed until after Thanksgiving break.
At the November eye check up with Dr. A., we received some good news, as it showed improvement in her field of vision. I felt comfortable about letting Heidi get behind the wheel of our Jeep over the break. Acting like a normal teenager was very satisfying to her. ("Normal" is a big issue for post-concussion syndrome kids, because so much of their life isn't normal.)
We saw Dr. Moser on November 29, 2010. She reasonably suggested that we might want to begin thinking about a neuropsychological evaluation to document a request for SAT accommodations. Such requests take about six months to document, from evaluation through processing and approval by the College Board, so the process needs to begin with a wary eye on the SAT test calendar. We agreed to consider it for Christmas break.
Completing the concussion puzzle
On December 2, 2010 we again saw Heidi's sports doctor, Dr. S. At this point, he was frank; there wasn't much left to suggest as we faced each other in the exam room, almost ten months after her concussion. After listening to Heidi describe her continuing symptoms, he again brought up the possible use of the drug Amantadine, which we had declined in the spring. Amantadine is an established anti-viral medication which has been found to have positive neurologic effects for Parkinson's patients, and is now coming into use for lingering concussion symptoms. It had been discussed at the Harvard concussion symposium, too.
With nothing left to lose, Heidi agreed to give Amantadine a try. Brain-active drugs are typically ramped up from a small dose to a full dose over the course of several weeks before improvement is seen. In Heidi's case, her remaining symptoms were gone in a matter of days! Needless to say, she was ecstatic. I phoned Dr. S with the news, and Heidi was thrilled to deliver that report to our Boston doctor on December 16. We were so close. But hockey season had already begun back at school, and there was a small matter to settle with the dean.
When the dean saw Heidi's new schedule after Thanksgiving, with hockey listed as her winter sport, but not saying that she was going to be a student coach, fireworks had exploded. The dean read Heidi the riot act; she could manage the team, but she couldn't be on the bench (even with a helmet), she had to always stay behind the glass, etc., etc. Heidi had been very upset. Dr. S. had a good laugh while Heidi described the scene, and calmly said directly to her, "I've had many hockey players in this room. But, never a hockey coach. I am clearing you to be a student coach. On the ice." He sent the permission off to the school physician, and faxed one to the health center. Heidi carried her own copy directly to the ice rink, and put on her skates that night, taking pleasure in simply being able to lace up her skates.
A delicate balance
At the visit to Dr. S on January 13, 2011, we started by celebrating the success of the Amantadine, and made plans to begin ramping the dose down, which is usually done after an extended course of the drug over many months, and over a vacation, so that, if symptoms recur, the dosage can be increased before classes resume. But Heidi was adamant about getting off Amantadine as quickly as possible, pointing to a brief school holiday in early February in case the symptoms returned; and arguing that early in the term would be better than later. The check-up at 50 weeks post-concussion (the last week of January 2011) confirmed the lasting success of the Amantadine: no symptoms had returned. The ImPACT scores were all terrific. We were almost at the end of our long detour and about to get back on the main road.
But there was still a problem with her balance that needed to be addressed. In addition to her history of concussion and hearing disability, Heidi had experienced major balance problems two years earlier in 2008, when she developed an extended case of vertigo. Although the vertigo eventually cleared, we had not had a chance to have a vestibular therapist evaluate her balance before she returned for boarding school in fall 2010. I asked Dr. S. whether we could we get a vestibular evaluation to set a new baseline for any future balance problems. After I explained Heidi's history, he readily agreed.
Two weeks later, Heidi had her evaluation. When the testing was over, to my very great surprise, the therapist asked if we could start vestibular rehab therapy (VRT) that day. I was stunned. He was sure he could improve Heidi's balance and vestibular function. True enough, six weeks later, at the end of March 2011, now nearly fourteen months after her concussion, all balance metrics were well in the normal range. Since then, I always mention the idea and the importance of VRT when discussing youth sports concussion, because it is not a potential concussion therapy most people know about. Research has already begun in the kinesiology labs at the University of Michigan, among other places.
While this is very uncertain territory, a recent study (fall 2011) suggests that the degree of dizziness right after a concussion may be indicative of the eventual length of recovery, with extreme dizziness suggesting a longer recuperation, i.e. post-concussion syndrome. In Heidi's case, she agreed that her concussion had made her so dizzy that she had great difficulty moving around campus in the early days, and that the dizziness continued for weeks. (Note: A separate medical specialty, neurotology, attends to dizziness and balance issues, but neurotologists are not necessarily current on sports concussions. Our friend Charlotte's treatments with a noted neurotologist, for instance, were not productive).
On the road again
I would love to tell you that, like a movie ending, Heidi returned to the ice, worked hard, and got chosen for the U-18 USA Hockey Development Team, etc. But, that isn't ever going to happen. She's not going to play NCAA college hockey like her hero, Jessie Vetter of Wisconsin. We are thrilled that we have our daughter back; but many families aren't that lucky. We continue to keep in our thoughts some of the families and concussed student-athletes we met along our unmarked detour, including Alice (basketball), Charlotte (soccer), and Kara (softball).
I have come to suspect that post-concussion syndrome might always be with Heidi. Just as a bad back or trick knee sometimes acts up, so does her brain. When it does, I encourage her to practice her CN (chiropractic neurology) brain exercises, and we schedule therapy sessions with the CN and CST.
Heidi isn't completely the way she was. She still experiences light and taste sensitivity. Her ability to perform mathematical and other quantitative analyses is not what is used to be, although not materially impaired. The incremental hearing loss is permanent, and she still needs more sleep (she's in bed around ten, rarely much later). She carefully monitors her energy levels: she is more susceptible to becoming overtired and developing headaches than before the concussion.
The lengthy SAT and ACT tests are still extra demanding; although after the Amantadine we decided to forgo any request for accommodations. It turns out that, post-concussion, the shorter test segments (20-25 minutes) on the SAT were slightly easier for Heidi than the longer segments on the ACT (more like 45-60 min. with 75 questions on the mathematics section). On the math practice tests for the ACT, Heidi noticed a big drop off in accuracy after the 40th question. The second time around, we rehearsed doing the chiropractic brain exercises every 10 questions after the half-way point to try to restore her cognitive energy, and her score did improve several points.
Heidi has applied to college, but instead of hockey schools, we chose selective institutions with harp schools. She is preparing for a harp competition in July 2012. It's been a blessing that she has had something else besides athletics on which to focus her energy. My husband is even getting excited about skiing with her again, since we don't have to cope with a hockey schedule. Denver seems far from New Jersey, but it does have an attractive harp program!
Part Eight in a series, "The Unmarked Detour."
For more in the series, click here.
For a page listing a companion series of video segments featuring Dorothy Bedford, click here.
Dorothy Bedford is a mother of three and lives in Princeton, New Jersey.Posted January 31, 2012