A lot of people have asked me what the prognosis is for Lim, and what can be done or tested or prescribed etc. So, I thought I'd put together some of the research I've done on PCS for anyone who is interested.
A few points of note:
1. Post Concussion Syndrome is a collection of symptoms experienced by SOME people who suffer a concussion. Not everyone experiences them and what symptoms and how badly people experience them varies from person to person and concussion to concussion.
2. There is NO proven correlation between severity of initial impact (or the TBI: Traumatic Brain Injury) and the extent or duration of PCS.
3. Symptoms of PCS can last for days or months after the initial TBI.
4. Experts now tend to classify concussions as "simple" or "complex" (the latter meaning symptoms last longer than 10 days).
5. There is some evidence that people can be genetically predisposed to PCS symptoms.
6. Experts differ on whether PCS is caused by damage to the actual brain, a disruption of neurotransmitters, or whatever it is that causes depression/PTSD etc. So, one path of "treatment" is to put victims on Elavil or some similar antidepressant for a time.
7. PCS does not follow a timetable, and it does not trend linearly. That is, improvement does not tend to be consistent or predictable. One day may be somewhat better than the last and the next may be worse. Symptoms can disappear and reappear. Lim's headache appears to ebb and flow like the tide depending on the amount of stimuli around her and the time of day.
So, what do we know about Lim so far:
1. She did not black out on impact, but she was immediately dizzy and headachey.
2. Her CT scan, done two days after the impact, was normal. Her MRI, done almost 4 weeks after impact, was normal. So, not visible damage to her brain has occurred.
3. She has no neck or back pain, ear pain, loss of strength in appendages, or vision issues.
4. Cognitively she is fairly sharp (counting backwards from 100 by 7s out loud and some other simple tests the Mayo Dr. performed last week) and she has been very inquisitive and communicative.
5. She cannot read without the headache spiking. She cannot watch TV. She cannot listen to music for long without the headache spiking. Artificial lights cause the headache to spike. Loud voices do the same.
6. Once the headache spikes, it takes a couple of hours of quiet rest to return to baseline. At no point has she been headache free since the impact.
7. Her appetite is hit or miss and has been since the impact.
8. Her sleep is very disrupted. She is exhausted but she cannot sleep much during the day.
9. Sometimes Lexi is there. Sometimes Lexi is not. It is scary and frustrating when she is not.
10. We have another appointment with Mayo on Tuesday. Right now we have an appointment with UF Shands on neuro on March 21. Nemours won't see her until she has had symptoms for TWO months, aka March 22.
11. I am working on getting Mayo to set up a consult somewhere else, sooner. Getting such a creature is very difficult, especially from Clearwater in the middle of a swim meet on a holiday weekend.
12. Lim has now missed 4 weeks of school. She went for a total of TWO classes last week. It did not go well and she actually seems worse than at the beginning of the week. This could be because I am weaning her off the Elavil.
13. Our days consist of:
Lim wakes up in a fog. I make her hot cocoa and maybe some french toast.
We snuggle on the bed for a bit.
She takes a bath and I try to work out or do chores.
She lays down on the bed. I join her.
At some point we go get a smoothie and maybe sit outside taking pictures or throwing the ball for the dogs.
We lay on the bed.
I run to EHS and meet Bim after school for an hour to chat and give her her swim stuff.
I go back home and either snuggle on the bed with Lim or sit outside, depending on how she is feeling.
M picks up Bim and everyone but Lim eats dinner (Lim usually has no appetite at that point).
Lim and I go upstairs and snuggle while she starts to fall asleep, and Bim does homework while Matthew does chores.
I leave Lim half or all the way asleep and spend an hour with Bim before she goes to bed.
Insert doctor's appointments as needed. On days she tries school, I drop her off and park in the lot and either run or read for the 45 mins she is actually in class. If she gets to stay any longer I will probably be parked there as well until she demos she can handle a predictable chunk of time.
Occasionally M comes home early and I stay at EHS and run and watch Bim's practice.
Who wishes they were walking in my shoes NOW...?
Here are a few links to info I have found, if you want to read up on it for yourself:
http://www.mayoclinic.com/health/post-concussion-syndrome/DS01020
http://www.training-conditioning.com/2010/08/30/what_happens_next/index.php
http://health.usnews.com/health-news/family-health/brain-and-behavior/articles/2011/01/29/multiple-concussions-raise-teen-athletes-health-risks
http://www.examiner.com/sports-in-boston/marc-savard-still-suffering-from-post-concussion-syndrome
Recent interview with Sidney Crosby:
http://www.youtube.com/watch?v=Z3G__Z0WdKM
...that's my why, what's yours?
18 February 2011
16 February 2011
The Great Oak
Once again I am reminded of how completely blessed the minis are to be able to attend the school that they do...
From the moment I contacted Lim's teachers to let them know of the concussion, EHS has been phenomenal in their response. Whether it was reassuring phone calls from the guidance counselors, frequent emails from her teachers and coaches (notably, NOT her swimming coaches - they've been pretty much out of contact... Instead, I am referring to her track coaches, who had only met her a couple of times before her injury but who have been wonderful in their support), cards and posters from classmates, or the fantastic post-concussion policy the school has in place, EHS has been a bright light in a fairly dingy month for Team DiPaolo.
As Lim and I sat outside her classroom waiting for her class to return from lunch today (we decided to try again but wait until after lunch, when most of her academic classes were today), we wandered over to the Great Oak that is the centerpiece of the campus. The word "enormous" does not do this tree justice. Stately. Imposing. Aged. Peaceful. Elegant. Stunning. You name it, it IS it.
Lim and I stood looking at the tree and down towards the area where the middle school kids would emerge from lunch. Lim described the post-lunch habits of the average middle schooler. Upper school kids walked past occasionally. The campus resonated with an amazing tranquility, broken only by drifting sounds from the road and the occasional young voice. Squirrels (always squirrels in our world, huh) scampered around fearlessly. We strolled over to check out the newly opened classroom building, replete with a center common area full of flowers and worthy of a college campus.
And once again I thought to myself "self, your children are beyond blessed to be able to attend a school like this on a campus like this...". And all of my "selves" nodded in unison (an unusual occurrence, believe me) in agreement.
Having attended a college planning meeting earlier today for EIGHTH GRADE parents, where they presented us with handouts detailing various academic tracks and the typical school that following that track might lead you to... As well as providing copies of actual transcripts of current students to provide talking points on the various types of course progressions students can follow and how they appear to college admissions counselors... I continue to be amazed at the advantages attending a school like this provide.
As the kids and teachers wandered back to the 6th grade area after lunch, Lim saw one of her track coaches (remember, this injury happened exactly four days into track season) who seemed genuinely excited to see her and took the time to stop and talk to her and offer words of encouragement and support. Each teacher and student greeted her happily. Lim visibly brightened, although I could tell she was already feeling woozier after only a short time on campus.
I've heard people scoff at the price of private school, and question whether the value received is worth the expense...every family makes it's own decisions based on it's own priorities and resources. All I know is, I can't imagine what a nightmare life would be like right now if we had to deal with a public school and all of it's inflexibility, red tape, and anonymity.
In the event that the biofather decides to retaliate against the girls by declining to pay their tuition, M and I will do whatever it takes to ensure the girls finish their high school careers at EHS. As M likes to say, we both grew up poor and we are NOT afraid to go be poor again, lol. Walmart greeters as a retirement plan, here we come.
I'm not sure words can ever express how grateful we have been for the support and understanding coming from the EHS comnunity, or how grateful I am that the minis have the opportunity to attend a school like this....
Lim has now joined me in the truck (my new home away from home will be the teacher's parking lot at EHS until Lim shows she can make it through more than a period at a time) and is resting with her eyes closed while her classmates attend PE. In 20mins or so she will go back in and try to make it through another academic period, although her headache spiked substantially during just one class period. Tomorrow she gets an MRI at noon, and hopefully we will be in to see a neuro doctor at UF Shands soon as well.
Baby steps down a long long road. I wish the Great Oak could talk. Maybe he could impart some patience and wisdom and instill some of his peaceful strength in Lim (and me...). I know that this whole experience is likely to make Lim a VERY centered and mentally strong and resilient person, and it has probably forced me to learn, or at least temporarily accept, a thing or two too... But I still wish the Oak could talk.
...that's my why, what's yours?
From the moment I contacted Lim's teachers to let them know of the concussion, EHS has been phenomenal in their response. Whether it was reassuring phone calls from the guidance counselors, frequent emails from her teachers and coaches (notably, NOT her swimming coaches - they've been pretty much out of contact... Instead, I am referring to her track coaches, who had only met her a couple of times before her injury but who have been wonderful in their support), cards and posters from classmates, or the fantastic post-concussion policy the school has in place, EHS has been a bright light in a fairly dingy month for Team DiPaolo.
As Lim and I sat outside her classroom waiting for her class to return from lunch today (we decided to try again but wait until after lunch, when most of her academic classes were today), we wandered over to the Great Oak that is the centerpiece of the campus. The word "enormous" does not do this tree justice. Stately. Imposing. Aged. Peaceful. Elegant. Stunning. You name it, it IS it.
Lim and I stood looking at the tree and down towards the area where the middle school kids would emerge from lunch. Lim described the post-lunch habits of the average middle schooler. Upper school kids walked past occasionally. The campus resonated with an amazing tranquility, broken only by drifting sounds from the road and the occasional young voice. Squirrels (always squirrels in our world, huh) scampered around fearlessly. We strolled over to check out the newly opened classroom building, replete with a center common area full of flowers and worthy of a college campus.
And once again I thought to myself "self, your children are beyond blessed to be able to attend a school like this on a campus like this...". And all of my "selves" nodded in unison (an unusual occurrence, believe me) in agreement.
Having attended a college planning meeting earlier today for EIGHTH GRADE parents, where they presented us with handouts detailing various academic tracks and the typical school that following that track might lead you to... As well as providing copies of actual transcripts of current students to provide talking points on the various types of course progressions students can follow and how they appear to college admissions counselors... I continue to be amazed at the advantages attending a school like this provide.
As the kids and teachers wandered back to the 6th grade area after lunch, Lim saw one of her track coaches (remember, this injury happened exactly four days into track season) who seemed genuinely excited to see her and took the time to stop and talk to her and offer words of encouragement and support. Each teacher and student greeted her happily. Lim visibly brightened, although I could tell she was already feeling woozier after only a short time on campus.
I've heard people scoff at the price of private school, and question whether the value received is worth the expense...every family makes it's own decisions based on it's own priorities and resources. All I know is, I can't imagine what a nightmare life would be like right now if we had to deal with a public school and all of it's inflexibility, red tape, and anonymity.
In the event that the biofather decides to retaliate against the girls by declining to pay their tuition, M and I will do whatever it takes to ensure the girls finish their high school careers at EHS. As M likes to say, we both grew up poor and we are NOT afraid to go be poor again, lol. Walmart greeters as a retirement plan, here we come.
I'm not sure words can ever express how grateful we have been for the support and understanding coming from the EHS comnunity, or how grateful I am that the minis have the opportunity to attend a school like this....
Lim has now joined me in the truck (my new home away from home will be the teacher's parking lot at EHS until Lim shows she can make it through more than a period at a time) and is resting with her eyes closed while her classmates attend PE. In 20mins or so she will go back in and try to make it through another academic period, although her headache spiked substantially during just one class period. Tomorrow she gets an MRI at noon, and hopefully we will be in to see a neuro doctor at UF Shands soon as well.
Baby steps down a long long road. I wish the Great Oak could talk. Maybe he could impart some patience and wisdom and instill some of his peaceful strength in Lim (and me...). I know that this whole experience is likely to make Lim a VERY centered and mentally strong and resilient person, and it has probably forced me to learn, or at least temporarily accept, a thing or two too... But I still wish the Oak could talk.
...that's my why, what's yours?
15 February 2011
Tick tock tick tock...
Week four. Lim went to school this morning and made it through homeroom before her headache spiked dramatically. She toughed it out another half hour or so before we came home.
This scares me.
There, I said it. I don't understand why she has gotten better to this point and stopped. Why she can't read. Why she can't handle noise or lights very well. Why she seems stuck in this awful limbo. Nemours childrens' hospital neurologists won't even SEE her until she has had symptoms for TWO MONTHS. The Mayo doctor we've been dealing with is out of town until Friday. *I* am out of town Friday. He's booked Monday (a day off of school, thankfully) so we are going Tuesday at 7a. (And, I just scheduled an appointment for tomorrow morning with her regular Mayo doctor, if only to reassure me that there isn't something else we could or should be doing).
But I don't know what he can tell us, other than "it takes time". I suppose we could kick back up the dosage on the Elavil (and I may try that on my own anyway) but that creates some potential issues on the back end when we wean her off of it.
I've been reading about the injury suffered by the Penguins phenom, Sidney Crosby. He has now missed 15+ games off of a mild concussion from being clocked in the same exact spot as Lim took her hit. There is no timetable for his return, but there IS a lot of discussion about his toughness, and whether he is justified in waiting to come back. After all, he IS the leading scorer on his team, so isn't he letting his teammates down by not coming back and risking his entire future? (insert rolling eyes here).
------------------
Writus interuptus, first cousin to trainus interuptus... It is now Tuesday afternoon. Lim awoke feeling a bit worse today, and off we went to Mayo. Our regular Mayo doctor wants to set an MRI and get a neuropsychology/neurology consult for her, either with Mayo or at Nemours. Lim spent much of today dozing on the bed with the mutts.
Back to Sidney Crosby and the NHL. In researching what happened to him I also found a number of other players who have been flattened by PCS, both this year and in the past. I've read of the possible predisposition to more severe symptoms and of its possible relationship to PTSD and depression (hence the dosage of Elavil Lim is on right now), and I've seen that there is no timetable... and that some people continue having symptoms for years after their last concussion. In other words, Lim has good company.
None of this eases the concern and frustration I feel for Lim. She is now coming up on an entire month out of school. Her flag football playing days are over. So too her soccer playing days, brief as they were and talented as she appeared to be. Some glitch in her system led to this complex reaction to the original brain trauma and we have no interest in experimenting with future impacts and repercussions (reconcussions?). She is on the verge of missing her first high school track season, which had started off so promising. Lord only knows when she might be able to handle the exertion and flip turns of a swim practice...
At this point I'd just be ecstatic for her to be able to read again comfortably.
This entire trip has been a very lonely journey for both Lim and me. Matthew and Bim have been helpful and flexible and supportive (Matthew a bit more so, of course) in spite of the serious disruption to the family routine. Bim has done her best to understand why things are different and to not be too resentful, but it is still difficult on her. The radio and tv are generally off and Bim has to keep a good governor on her normal boisterous exuberance, as loud noises still greatly bother Lim's head. My attention has been divided differently, and, even though Matthew and I have worked together in a concerted effort to get me some time with Bim and him some with Lim, she has definitely gotten the short end of the stick.
But, in the end, Lim and I have been united in our isolation. While Lim expresses her feelings pretty clearly to me (sometimes in conversational form and sometimes in the form of "Mom taking the brunt of the 11yo frustration storm"), I'm actually struggling to find a way to express mine - time and opportunity are in short supply, and writing is hit or miss as well. When I actually get 5 minutes in a car by myself I debate whether to call a human or crank up the music I seldom hear anymore. Working out feels more like disloyalty to Lim than an outlet. Besides, I'm not even sure I can describe what I feel anyway.
The gamut of emotions this past month encompasses empathy for Lim's own feelings and a witches brew of my own. The crazily full calendar we look forward to every spring and summer is starting to loom large on the horizon, and all the events we anticipated are now clouded with question marks. And when those question marks will be answered is ALSO a question mark... And, as anyone who knows me knows, I hate unknowns. The blinking question mark exists even within the 24hours of any given day, as whether Lim can go to school, when she goes, and how long she stays is all TBD on a rapidly changing basis.
As with anything, Lim and I do much better when we take the future in hourly or daily increments and refrain from looking too much at the big picture. Doing that helps diffuse the impact of how quickly time is racing by, and how much she is missing out on right now (and for the foreseeable future). It helps us avoid dealing with questions no one can answer, like, when will she be able to read again, when will she be pain free, when will she be able to actually last through a day of school, when will she be able to start actually participating in school, when will she be able to get caught up academically, when will she be able to swim or run or watch tv or listen to music....
And what if the answer is.... Never?
Now THAT is scary.
...that's my why, what's yours?
This scares me.
There, I said it. I don't understand why she has gotten better to this point and stopped. Why she can't read. Why she can't handle noise or lights very well. Why she seems stuck in this awful limbo. Nemours childrens' hospital neurologists won't even SEE her until she has had symptoms for TWO MONTHS. The Mayo doctor we've been dealing with is out of town until Friday. *I* am out of town Friday. He's booked Monday (a day off of school, thankfully) so we are going Tuesday at 7a. (And, I just scheduled an appointment for tomorrow morning with her regular Mayo doctor, if only to reassure me that there isn't something else we could or should be doing).
But I don't know what he can tell us, other than "it takes time". I suppose we could kick back up the dosage on the Elavil (and I may try that on my own anyway) but that creates some potential issues on the back end when we wean her off of it.
I've been reading about the injury suffered by the Penguins phenom, Sidney Crosby. He has now missed 15+ games off of a mild concussion from being clocked in the same exact spot as Lim took her hit. There is no timetable for his return, but there IS a lot of discussion about his toughness, and whether he is justified in waiting to come back. After all, he IS the leading scorer on his team, so isn't he letting his teammates down by not coming back and risking his entire future? (insert rolling eyes here).
------------------
Writus interuptus, first cousin to trainus interuptus... It is now Tuesday afternoon. Lim awoke feeling a bit worse today, and off we went to Mayo. Our regular Mayo doctor wants to set an MRI and get a neuropsychology/neurology consult for her, either with Mayo or at Nemours. Lim spent much of today dozing on the bed with the mutts.
Back to Sidney Crosby and the NHL. In researching what happened to him I also found a number of other players who have been flattened by PCS, both this year and in the past. I've read of the possible predisposition to more severe symptoms and of its possible relationship to PTSD and depression (hence the dosage of Elavil Lim is on right now), and I've seen that there is no timetable... and that some people continue having symptoms for years after their last concussion. In other words, Lim has good company.
None of this eases the concern and frustration I feel for Lim. She is now coming up on an entire month out of school. Her flag football playing days are over. So too her soccer playing days, brief as they were and talented as she appeared to be. Some glitch in her system led to this complex reaction to the original brain trauma and we have no interest in experimenting with future impacts and repercussions (reconcussions?). She is on the verge of missing her first high school track season, which had started off so promising. Lord only knows when she might be able to handle the exertion and flip turns of a swim practice...
At this point I'd just be ecstatic for her to be able to read again comfortably.
This entire trip has been a very lonely journey for both Lim and me. Matthew and Bim have been helpful and flexible and supportive (Matthew a bit more so, of course) in spite of the serious disruption to the family routine. Bim has done her best to understand why things are different and to not be too resentful, but it is still difficult on her. The radio and tv are generally off and Bim has to keep a good governor on her normal boisterous exuberance, as loud noises still greatly bother Lim's head. My attention has been divided differently, and, even though Matthew and I have worked together in a concerted effort to get me some time with Bim and him some with Lim, she has definitely gotten the short end of the stick.
But, in the end, Lim and I have been united in our isolation. While Lim expresses her feelings pretty clearly to me (sometimes in conversational form and sometimes in the form of "Mom taking the brunt of the 11yo frustration storm"), I'm actually struggling to find a way to express mine - time and opportunity are in short supply, and writing is hit or miss as well. When I actually get 5 minutes in a car by myself I debate whether to call a human or crank up the music I seldom hear anymore. Working out feels more like disloyalty to Lim than an outlet. Besides, I'm not even sure I can describe what I feel anyway.
The gamut of emotions this past month encompasses empathy for Lim's own feelings and a witches brew of my own. The crazily full calendar we look forward to every spring and summer is starting to loom large on the horizon, and all the events we anticipated are now clouded with question marks. And when those question marks will be answered is ALSO a question mark... And, as anyone who knows me knows, I hate unknowns. The blinking question mark exists even within the 24hours of any given day, as whether Lim can go to school, when she goes, and how long she stays is all TBD on a rapidly changing basis.
As with anything, Lim and I do much better when we take the future in hourly or daily increments and refrain from looking too much at the big picture. Doing that helps diffuse the impact of how quickly time is racing by, and how much she is missing out on right now (and for the foreseeable future). It helps us avoid dealing with questions no one can answer, like, when will she be able to read again, when will she be pain free, when will she be able to actually last through a day of school, when will she be able to start actually participating in school, when will she be able to get caught up academically, when will she be able to swim or run or watch tv or listen to music....
And what if the answer is.... Never?
Now THAT is scary.
...that's my why, what's yours?
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