It has been a while.
I last wrote in April as Lexi was about to swim her first large meet since the accident in the warm down pool last December.
I was right to be afraid. Unfortunately, my fears were realized NOT because of events naturally occurring during the course of a swim meet/crowded warm down pool, but instead because of the idiotic, infuriating actions of two 18+yo swimmers. Two kids (who should have known better) rough-housing around the edge of the pool during a meet warm down added to our own personal hell when one pushed the probably 200lb girl in on top of Lexi, and the college girl's knee hit Lexi in the head.
That's an anger that doesn't go away easily, especially when there was zero remorse from the "kids", and even MORE especially when one of the same kids was doing a g**d**n chicken fight in the middle of the warm down pool at the next meet.
That's an anger that eats at my stomach lining late at night, as I worry about whether our very smart, very driven daughter is going to be able to carry a full course load this semester during her junior year of HS (aka, the most important year academically AND athletically). While some smug ass kids move on with their lives, and most of the friends, teammates, and adults in Lexi's world move along assuming things are fine in HER life, Matthew, Christi and I are the ones who have to see Lexi's pain and struggle continue.
She tries to hide it well, because she knows in this instant gratification, snapchat sized snippet driven world most people have no patience for long term issues. Having heard teammates whisper that she is making up the effects of the concussions, Lexi is super cautious about trying not to be "special needs"... but the reality is, she is going to need help and understanding for the foreseeable future.
So with school rapidly approaching the harsh reality that she is not 100%, or even close to it, is like a sucker punch to the gut. I never imagined another round of meetings with admin and advisors and learning specialists at school, or that I'd be advocating for her to be able to drop a class and make it up online or locally over the summer. She is stubbornly insisting on trying her loaded schedule for a week (AP Lang, AP Comp Gov, Honors Pre-Calc, Honors Physics, Spanish IV) to see if she has a prayer of juggling 9 swim practices a week, plus academics, with a brain that needs more sleep than normal kids AND plenty of rest breaks during the day, neither of which is going to be easy to come by during HS season, at least.
I try not to be bitter, or overtly angry, at the situation, because it doesn't change it and won't help fix it... but boy if I could cold cock the punk who set us back months and then had the insolence to try and tell people Lexi was making it up, I would. I also spin helplessly trying to come up with new ideas for people to talk to or ways to "fix" the situation, but am coming up blank. Short of hoofing all over the place polling neurologists and TBI specialists, which we won't have time to do once school starts, there is really nothing I can do right now. We rode the UPMC line as far as it can take us, IMO, and other than trying different meds (which is an awful process when you don't have days or weeks or months to waste feeling drugged or impaired or sleepy or wired in hopes it helps the headaches) or shutting her down completely I don't know what else we can do.
So now we start the process of watching, waiting, and planning options for school, while Matthew and I hold our breath and try to help Lexi deal with a schedule that is demanding enough for a fully functioning teen, never mind one who has to deal with what Lexi does on a daily basis. (And I just found out that taking a class on-line isn't an option, sigh...).
On we go.
14 August 2015
24 April 2015
Back in the scrum she goes...
So it has now been over 4.5 months since L got her latest concussion. The effects still permeate her day. But she has fought her way back yard by yard to get into some semblance of swimming shape, and to get to the point where she completes probably 90% of each practice.
And today she will swim in her first meet since she got clocked in the forehead in the warm down pool at UF.
Which means she will be a part of the chaotic scrum that is warm up and the warm down pool. The mass start at Ironman Florida is nothing compared to that churn. At least at IMFL everyone is going in the same direction, more or less. Any given lane in warm down has: 5 people bobbing up and down at the end of the lane, sometimes to the side, sometimes not; 4 people who don't care how close a swimmer is to turning, they're gonna push off NOW; a half dozen people doing some form of kick, one oversized bully swimming down the middle of the lane over people; one terminally SLOW person who doesn't know how slow he is clogging up the middle; 3 people jumping in and 3 people slowly climbing out; 2 people who inexplicably stop half way down the pool to talk, turn around, or stand there; etc. All going in different directions and at different speeds in different strokes and with different levels of experience, expertise, and/or common sense.
And into that we are sending the egg-shell tough skull attached to our daughter.
(Insert green emoji face barfing here...)
Part of me wants to go hover over her lane, even though all that buys me is a front row seat if something happens... it doesn't stop anything from happening.
Part of me wants to put her in a helmet.
Part of me wants to make her quit swimming and take up running, or knitting.
Part of me wants to demand that every pool we go to clear a complete lane for her and any other kid with a pre-existing TBI to warm up and down in (ok, MOST of me wants to do that... why NOT take initiative and create a safe zone for these kids... surely L is not the only one out there in the swimming world...).
And all of me just wants to wrap her in some kind of bubble wrap, or force field, or something, so that she (and we) never has to endure this nightmare again... because each time the stakes are higher and the effects more frightening.
So as happy as I am for her to finally get to swim in a meet again is as terrified as I am that something will happen again, as irrational as that may be. What happened in Gainesville was a fluke, frankly -- a random occurrence that we probably couldn't duplicate if we tried to stage it to do so. But once you realize that random stuff happens, and once it happens to your kid, those doubts creep in and your blissful ignorance dissipates, and you start seeing possible head injuries in every shadow.
I've always been an "ah, what's the worst that can happen" kind of person, but that attitude straightens up quickly when the answer is "long term brain damage" or "chronic headaches" for my daughter.
And yes, I know that she could get another TBI basically anywhere. Heck, Kaito clocked me so hard in the temple the other day that I had a headache for two days. If that had been L, we'd be in a dark room again, using Kaito's pelt as a throw blanket. So, random events happen, and we can't live life cowering in fear of them.
I'm sure the knot in my stomach will lessen as time passes and brain function remains undisturbed by any errant kicks or dumba**es swimming down the wrong side of the lane or careless kids just messing around. But for now...
On we go.
And today she will swim in her first meet since she got clocked in the forehead in the warm down pool at UF.
Which means she will be a part of the chaotic scrum that is warm up and the warm down pool. The mass start at Ironman Florida is nothing compared to that churn. At least at IMFL everyone is going in the same direction, more or less. Any given lane in warm down has: 5 people bobbing up and down at the end of the lane, sometimes to the side, sometimes not; 4 people who don't care how close a swimmer is to turning, they're gonna push off NOW; a half dozen people doing some form of kick, one oversized bully swimming down the middle of the lane over people; one terminally SLOW person who doesn't know how slow he is clogging up the middle; 3 people jumping in and 3 people slowly climbing out; 2 people who inexplicably stop half way down the pool to talk, turn around, or stand there; etc. All going in different directions and at different speeds in different strokes and with different levels of experience, expertise, and/or common sense.
And into that we are sending the egg-shell tough skull attached to our daughter.
(Insert green emoji face barfing here...)
Part of me wants to go hover over her lane, even though all that buys me is a front row seat if something happens... it doesn't stop anything from happening.
Part of me wants to put her in a helmet.
Part of me wants to make her quit swimming and take up running, or knitting.
Part of me wants to demand that every pool we go to clear a complete lane for her and any other kid with a pre-existing TBI to warm up and down in (ok, MOST of me wants to do that... why NOT take initiative and create a safe zone for these kids... surely L is not the only one out there in the swimming world...).
And all of me just wants to wrap her in some kind of bubble wrap, or force field, or something, so that she (and we) never has to endure this nightmare again... because each time the stakes are higher and the effects more frightening.
So as happy as I am for her to finally get to swim in a meet again is as terrified as I am that something will happen again, as irrational as that may be. What happened in Gainesville was a fluke, frankly -- a random occurrence that we probably couldn't duplicate if we tried to stage it to do so. But once you realize that random stuff happens, and once it happens to your kid, those doubts creep in and your blissful ignorance dissipates, and you start seeing possible head injuries in every shadow.
I've always been an "ah, what's the worst that can happen" kind of person, but that attitude straightens up quickly when the answer is "long term brain damage" or "chronic headaches" for my daughter.
And yes, I know that she could get another TBI basically anywhere. Heck, Kaito clocked me so hard in the temple the other day that I had a headache for two days. If that had been L, we'd be in a dark room again, using Kaito's pelt as a throw blanket. So, random events happen, and we can't live life cowering in fear of them.
I'm sure the knot in my stomach will lessen as time passes and brain function remains undisturbed by any errant kicks or dumba**es swimming down the wrong side of the lane or careless kids just messing around. But for now...
On we go.
21 March 2015
Meds meds meds
I think that meds can be very useful. I also think that meds can create issues that were never there in the first place, and can cause one to end up chasing one's tail after each new issue... to the point that you become far removed from the original issue you took the meds for in the first place.
L is a fairly typical teen in that she has her mood swings. She's also very very sensitive, and very introspective. And she hates to be anything but perfect, or at least perceived as anything but perfect. She'll also probably be irked I am writing about this, but, hey, it's my damn blog so tough. :-) In this family we own our quirks and flaws just as much as the positives.
I've worried over the past years how everything has and will affect her. Her bio father's disappearance during her first concussion, the many MANY issues that followed in dealing with him, the emotions she HAS to have somewhere about that relationship, the surgeries, and typical teen stuff... all of it adds up. Chronic pain changes people. Feeling isolated or rejected or prevented from pursuing goals changes people. Eleven, twelve, thirteen year old kids, even fifteen year olds, are not equipped to process and handle everything she's been asked to deal with... and even though I feel good about how Matthew and I have supported, talked, listened, hugged, pointedly asserted and otherwise guided them through all of this, the reality is, none of us are equipped to deal with what we've faced as a family these past 6 years.
But, I think on the whole we've come through... THEY'VE come through... stronger, more self-aware, more resilient. And, theoretically, able to identify and address any unexpected emotional glitches or pre-dispositions that manifest down the road.
When L tried the amitryptaline after the first concussion, it was ugly. She was to take it before bed, and if she did not fall asleep before the med kicked in, it was like interacting with an argumentative drunk (you know how it is: they are 100% certain in the intelligence and accuracy of what they are saying, all the while they are making exactly zero sense... and there is no way to de-escalate the situation because if you don't talk they'll keep coming after you and if you DO try to reason with them their complete irrationality takes over). She'd wake up in the morning knowing she'd been really angry and trying to fight with me but having NO idea why or about what. It was awful, and it didn't help with the symptoms.
I've also heard, and personally seen, horror stories about people getting off of Zoloft.
So in thinking about the two options (propranolol and zoloft) and talking to M, my friend who is a pharmacist, my sister, and L's regular Mayo physician, I decided to go against what Dr. C recommended and go with the MD's original choice, and we started on the propranolol. I haven't told UPMC yet, as I am waiting to see what happens with it. Yesterday was her second full dose after a week of half dosage. She had some side effects a few days during the single dose, including feeling disconnected and unfocused one day with kind of racing thoughts... but it was better the next day.
Now, yesterday she had what I consider a more serious side effect in that she felt like her body wasn't getting enough oxygen while she was swimming, and felt extremely weak. Like, pass-out weak. This is definitely a side effect of the prop to be concerned about, as it is actually a banned performance enhancing drug used by archers etc to slow their heart rate during competitions. That may work well for such a calm sport, but us swimmers NEED the heart to crank it up when we exert ourselves, or our body won't get what it needs to keep going.
So we will give it another few days to see if the side effects fade and any positive effects kick in... and if not, then I will wean her off of it. We discussed trying the zoloft if this doesn't work, and she and I agreed we don't want to do that. She'd rather deal with the headaches. And we can pursue the biofeedback and some other relaxation techniques to help with her self-imposed pressure etc.
This puts us in the position of having chosen NOT to take the main recommendation of the foremost concussion guru. And not having told him yet that we are following our instincts instead of his. Awkward.
I deeply respect doctors, and I admire what these guys are doing. But, as with any doctor (or anyONE, really) I also believe that people bring a paradigm to the table that they seek to follow or confirm. Each time we have been to UPMC one focus of the questions has been whether L's thoughts are making her symptoms worse. I know that they strongly believe in the mental component of PCS... isolation, dark thoughts, anxiety, stress, etc. And I 100% agree that that is an important aspect. But, I also believe that we are more equipped than the average person to deal with those aspects externally, rather than through medication. Our relationship with L is not the typical parent-teen relationship, and I know a lot more about this psychological stuff than most other laymen do, unfortunately.
So, we are going to keep pushing with the vestibular and exertional rehab, and give the propranolol another week or so (unless the side effects get too bad first). L is making definite, albeit slow, progress. Her grades are slowly improving. Her headache levels are taking longer to rise, not getting AS high, and dropping faster. She is back in the pool on a limited basis, although the effects of the prop may limit it more than we had anticipated.
But we are going to pass on the Zoloft. And maybe that makes us undesirable patients. But I've got to be a mother first, and my mother compass emphatically says "NO".
On we go.
L is a fairly typical teen in that she has her mood swings. She's also very very sensitive, and very introspective. And she hates to be anything but perfect, or at least perceived as anything but perfect. She'll also probably be irked I am writing about this, but, hey, it's my damn blog so tough. :-) In this family we own our quirks and flaws just as much as the positives.
I've worried over the past years how everything has and will affect her. Her bio father's disappearance during her first concussion, the many MANY issues that followed in dealing with him, the emotions she HAS to have somewhere about that relationship, the surgeries, and typical teen stuff... all of it adds up. Chronic pain changes people. Feeling isolated or rejected or prevented from pursuing goals changes people. Eleven, twelve, thirteen year old kids, even fifteen year olds, are not equipped to process and handle everything she's been asked to deal with... and even though I feel good about how Matthew and I have supported, talked, listened, hugged, pointedly asserted and otherwise guided them through all of this, the reality is, none of us are equipped to deal with what we've faced as a family these past 6 years.
But, I think on the whole we've come through... THEY'VE come through... stronger, more self-aware, more resilient. And, theoretically, able to identify and address any unexpected emotional glitches or pre-dispositions that manifest down the road.
When L tried the amitryptaline after the first concussion, it was ugly. She was to take it before bed, and if she did not fall asleep before the med kicked in, it was like interacting with an argumentative drunk (you know how it is: they are 100% certain in the intelligence and accuracy of what they are saying, all the while they are making exactly zero sense... and there is no way to de-escalate the situation because if you don't talk they'll keep coming after you and if you DO try to reason with them their complete irrationality takes over). She'd wake up in the morning knowing she'd been really angry and trying to fight with me but having NO idea why or about what. It was awful, and it didn't help with the symptoms.
I've also heard, and personally seen, horror stories about people getting off of Zoloft.
So in thinking about the two options (propranolol and zoloft) and talking to M, my friend who is a pharmacist, my sister, and L's regular Mayo physician, I decided to go against what Dr. C recommended and go with the MD's original choice, and we started on the propranolol. I haven't told UPMC yet, as I am waiting to see what happens with it. Yesterday was her second full dose after a week of half dosage. She had some side effects a few days during the single dose, including feeling disconnected and unfocused one day with kind of racing thoughts... but it was better the next day.
Now, yesterday she had what I consider a more serious side effect in that she felt like her body wasn't getting enough oxygen while she was swimming, and felt extremely weak. Like, pass-out weak. This is definitely a side effect of the prop to be concerned about, as it is actually a banned performance enhancing drug used by archers etc to slow their heart rate during competitions. That may work well for such a calm sport, but us swimmers NEED the heart to crank it up when we exert ourselves, or our body won't get what it needs to keep going.
So we will give it another few days to see if the side effects fade and any positive effects kick in... and if not, then I will wean her off of it. We discussed trying the zoloft if this doesn't work, and she and I agreed we don't want to do that. She'd rather deal with the headaches. And we can pursue the biofeedback and some other relaxation techniques to help with her self-imposed pressure etc.
This puts us in the position of having chosen NOT to take the main recommendation of the foremost concussion guru. And not having told him yet that we are following our instincts instead of his. Awkward.
I deeply respect doctors, and I admire what these guys are doing. But, as with any doctor (or anyONE, really) I also believe that people bring a paradigm to the table that they seek to follow or confirm. Each time we have been to UPMC one focus of the questions has been whether L's thoughts are making her symptoms worse. I know that they strongly believe in the mental component of PCS... isolation, dark thoughts, anxiety, stress, etc. And I 100% agree that that is an important aspect. But, I also believe that we are more equipped than the average person to deal with those aspects externally, rather than through medication. Our relationship with L is not the typical parent-teen relationship, and I know a lot more about this psychological stuff than most other laymen do, unfortunately.
So, we are going to keep pushing with the vestibular and exertional rehab, and give the propranolol another week or so (unless the side effects get too bad first). L is making definite, albeit slow, progress. Her grades are slowly improving. Her headache levels are taking longer to rise, not getting AS high, and dropping faster. She is back in the pool on a limited basis, although the effects of the prop may limit it more than we had anticipated.
But we are going to pass on the Zoloft. And maybe that makes us undesirable patients. But I've got to be a mother first, and my mother compass emphatically says "NO".
On we go.
UPMC trip #3
This is a little delayed. I blame C for having surgery on both feet lol.
We went to Pitt for the 3rd time last week, We arrived around midnight March 9th, Enjoyed a visit with my old (yes, in all senses of the word hahaha) friend from school and her husband (and adorable dog, but missed her equally adorable son, sadly), appointments in the afternoon on the 10th and the morning of the 11th, enjoyed a wonderful semi-surprise visit from my sister, b-i-l, and niece (10 hour round trip for 3 hours of face time... questionable sanity but major props for effort lol) and flew home, arriving after 11p.
This visit was a little less productive and kind of confusing, truth be told. L took the IMPACT test for the 4th time since december. We met with Dr. Pierce, the big gun's minion, and she gave us the results of the test and discussed L's symptoms and progress etc. L improved again in all measures of the test, and Dr. P told her that she was now in "normal" ranges. That was a bit of a surprise to L, who certainly does not feel normal and probably is not scoring "normally" for her (but alas we don't know what is normal for her, as we don't have a valid pre-concussion baseline). I could tell from the angle of Dr. P's questions where they were heading in terms of next treatment step, but decided to just listen and watch.
Next we met with the big guy, Dr. Collins, and Dr. Pierce together. He asked L a lot of questions about whether she was having trouble turning her thoughts off, or not focusing on her symptoms. He asked her how important swimming is to her on a scale of 1-10 --- "8" -- and then asked her if swimming is 8, what is 10. L cracked us all up by deadpanning "food". Collins told us that he believes that the headaches are being exacerbated by stress and tension and anxiety L is unwittingly putting on herself over academics and swimming etc. I think he is probably correct. I also think there can be an interesting chicken/egg debate on that, as the headaches are causing the stress, imo, and I think eliminating them eliminates the stress. Not so much vice-versa, imo.
Last visit we were told that L needed to back off. They wanted her to stop swimming and put her on Amantadine to try and break the migraine cycle. She probably only had a headache that crossed into PC migraine twice after that. Of course there is no way to know if it was the lack of swimming, the meds, time, or some combo of the three. Now this time Dr. C indicated that he believed L not swimming etc was part of the problem, and told her he wants her back in the pool. It was very confusing to L, who wasn't getting the difference and felt it was contradictory.
Worse, L took what Dr. C was saying about the headaches being exacerbated by her emotional state, as he perceived it, to mean that her symptoms are all in her head. This led to a very emotionally raw and angry L as we headed into the appointment with the MD. I tried to find Dr. C or Dr. P to ask them to explain what they meant, but they'd already zoomed on to the next patient.
Dr. C had told us, as we headed to the MD, that he thought there was a perfect second med to try in combo with the amantadine, and that he felt confident it would help a lot with the headaches under these circumstances. Dr. Woods, the MD, laid out three possible options (none of which, as it turned out, were the one Dr. C had been thinking of...): 1. meds used to treat ADD and ADHD, which she said don't affect kids without aDHD the same way. I'm thinking, if they turn HYPER kids into drugged zombies, WTF would they do to L? My NFW face shut that one down quickly. 2. Propranolol, which was originally designed for other stuff but has had success in cutting down on headaches in people with migraines and PCS. My sister tried it for her insanely awful chronic migraines but had to stop it because it lowered her already low BP and made her lightheaded and dizzy and pass-outy. 3. some sort of "tryptaline" that wasn't the one she'd been briefly on during PCS1 four years ago. An antidepressant that helped with sleep and had some effectiveness on PCS headaches.
She asked L a bunch of questions and we asked her what she would recommend for her own daughter. She said the Propranolol, and after we discussed side effects and withdrawal etc, we agreed that would be worth trying.
As we were leaving L ran into Dr. C while waiting for me, and he asked her what Dr. W had prescribed. When L told him, she said she could tell he wasn't happy. Interesting.
The next day we had appointments with Dr. Mucha ( the vestibular lady), and the exertion therapy doctor. Anne (Mucha) has to be one the nicest people we've met. She adjusted L's exercises and surprised her by finding an image of Channing Tatum and printing it out as L's eye target (instead of a boring X) for her. We saw her sandwiched between trips to the PT room, where L did treadmill and elliptical and some dryland assessments, and then was brought back to try "swimming"... in a very, very small 98' pool lol.
The exertion gal wrote up a return to swimming plan that didn't quite meet up with what Collins told L he wanted her to do (one was in the hundreds of yards, using a "paddle board" lol and one was "full speed ahead, but don't do too much too soon"). L was even more confused at this point.
We went back upstairs and met for the wrap up with Dr. C and Dr. P. I do believe Dr. C does really have a handle on L's emotional make-up and personality, and much of what he said, even 99%, is very valid and accurate. But. He told us that he'd talked to Dr. W and they were changing the med prescription to Zoloft. (At this point the prop had already been filled by M at home.) He said it would take up to 4 weeks to see results but that he felt it was the best med to address the anxiety and stress exacerbated headaches he believes L is experiencing.
He addressed L's concerns about the symptoms being "in her head" and explained what I had told her too -- that your thoughts and emotions can make the underlying issue worse, NOT that she is imagining the problem.
We talked some more, he encouraged L and told her he was confident this would all resolve, and we wrapped up.
When we got home we had a bottle of Propranolol and a bottle of Zoloft waiting for us, and a decision to make.
To be continued...
http://fycatd1.blogspot.com/2015/03/meds-meds-meds.html
We went to Pitt for the 3rd time last week, We arrived around midnight March 9th, Enjoyed a visit with my old (yes, in all senses of the word hahaha) friend from school and her husband (and adorable dog, but missed her equally adorable son, sadly), appointments in the afternoon on the 10th and the morning of the 11th, enjoyed a wonderful semi-surprise visit from my sister, b-i-l, and niece (10 hour round trip for 3 hours of face time... questionable sanity but major props for effort lol) and flew home, arriving after 11p.
This visit was a little less productive and kind of confusing, truth be told. L took the IMPACT test for the 4th time since december. We met with Dr. Pierce, the big gun's minion, and she gave us the results of the test and discussed L's symptoms and progress etc. L improved again in all measures of the test, and Dr. P told her that she was now in "normal" ranges. That was a bit of a surprise to L, who certainly does not feel normal and probably is not scoring "normally" for her (but alas we don't know what is normal for her, as we don't have a valid pre-concussion baseline). I could tell from the angle of Dr. P's questions where they were heading in terms of next treatment step, but decided to just listen and watch.
Next we met with the big guy, Dr. Collins, and Dr. Pierce together. He asked L a lot of questions about whether she was having trouble turning her thoughts off, or not focusing on her symptoms. He asked her how important swimming is to her on a scale of 1-10 --- "8" -- and then asked her if swimming is 8, what is 10. L cracked us all up by deadpanning "food". Collins told us that he believes that the headaches are being exacerbated by stress and tension and anxiety L is unwittingly putting on herself over academics and swimming etc. I think he is probably correct. I also think there can be an interesting chicken/egg debate on that, as the headaches are causing the stress, imo, and I think eliminating them eliminates the stress. Not so much vice-versa, imo.
Last visit we were told that L needed to back off. They wanted her to stop swimming and put her on Amantadine to try and break the migraine cycle. She probably only had a headache that crossed into PC migraine twice after that. Of course there is no way to know if it was the lack of swimming, the meds, time, or some combo of the three. Now this time Dr. C indicated that he believed L not swimming etc was part of the problem, and told her he wants her back in the pool. It was very confusing to L, who wasn't getting the difference and felt it was contradictory.
Worse, L took what Dr. C was saying about the headaches being exacerbated by her emotional state, as he perceived it, to mean that her symptoms are all in her head. This led to a very emotionally raw and angry L as we headed into the appointment with the MD. I tried to find Dr. C or Dr. P to ask them to explain what they meant, but they'd already zoomed on to the next patient.
Dr. C had told us, as we headed to the MD, that he thought there was a perfect second med to try in combo with the amantadine, and that he felt confident it would help a lot with the headaches under these circumstances. Dr. Woods, the MD, laid out three possible options (none of which, as it turned out, were the one Dr. C had been thinking of...): 1. meds used to treat ADD and ADHD, which she said don't affect kids without aDHD the same way. I'm thinking, if they turn HYPER kids into drugged zombies, WTF would they do to L? My NFW face shut that one down quickly. 2. Propranolol, which was originally designed for other stuff but has had success in cutting down on headaches in people with migraines and PCS. My sister tried it for her insanely awful chronic migraines but had to stop it because it lowered her already low BP and made her lightheaded and dizzy and pass-outy. 3. some sort of "tryptaline" that wasn't the one she'd been briefly on during PCS1 four years ago. An antidepressant that helped with sleep and had some effectiveness on PCS headaches.
She asked L a bunch of questions and we asked her what she would recommend for her own daughter. She said the Propranolol, and after we discussed side effects and withdrawal etc, we agreed that would be worth trying.
As we were leaving L ran into Dr. C while waiting for me, and he asked her what Dr. W had prescribed. When L told him, she said she could tell he wasn't happy. Interesting.
The next day we had appointments with Dr. Mucha ( the vestibular lady), and the exertion therapy doctor. Anne (Mucha) has to be one the nicest people we've met. She adjusted L's exercises and surprised her by finding an image of Channing Tatum and printing it out as L's eye target (instead of a boring X) for her. We saw her sandwiched between trips to the PT room, where L did treadmill and elliptical and some dryland assessments, and then was brought back to try "swimming"... in a very, very small 98' pool lol.
The exertion gal wrote up a return to swimming plan that didn't quite meet up with what Collins told L he wanted her to do (one was in the hundreds of yards, using a "paddle board" lol and one was "full speed ahead, but don't do too much too soon"). L was even more confused at this point.
We went back upstairs and met for the wrap up with Dr. C and Dr. P. I do believe Dr. C does really have a handle on L's emotional make-up and personality, and much of what he said, even 99%, is very valid and accurate. But. He told us that he'd talked to Dr. W and they were changing the med prescription to Zoloft. (At this point the prop had already been filled by M at home.) He said it would take up to 4 weeks to see results but that he felt it was the best med to address the anxiety and stress exacerbated headaches he believes L is experiencing.
He addressed L's concerns about the symptoms being "in her head" and explained what I had told her too -- that your thoughts and emotions can make the underlying issue worse, NOT that she is imagining the problem.
We talked some more, he encouraged L and told her he was confident this would all resolve, and we wrapped up.
When we got home we had a bottle of Propranolol and a bottle of Zoloft waiting for us, and a decision to make.
To be continued...
http://fycatd1.blogspot.com/2015/03/meds-meds-meds.html
21 February 2015
"when is that headache going to go away?"
Yeah, that's the question we have too... although this one was asked a bit less softly by a teacher who, whether he intended to or not, made L feel a bit like a malingerer and a lot like a burden.
And no, she didn't not finish her rough draft of her paper because she "didn't feel like it" when she got home from school, but thanks for asking.
I understand that what Lexi is dealing with is difficult for people to grasp. Perhaps some people think she should just be able to suck it up and push through.
So let me try and put it in terms everyone can understand:
Try living without using your brain.
If you hurt your ankle, you can use crutches. You can stay off of it. You can use a wheel chair. You can still get around without using that ankle. It might be awkward, but it's doable.
Try reading without using your eyes or brain.
If you hurt your shoulder, you can use your other arm and put that arm in a sling. It might be awkward because it might be your dominant arm, but you can still function.
Try memorizing information without using your eyes or brain.
Now, tear a hamstring. Rest it for a few days. Is it better yet? Why aren't you out running on it? Why aren't you pushing through it? When is that hamstring going to feel better?!
I've realized that, maybe thanks to our sound bite, story-of-the-minute filled world, many people have no staying power. They are all energized and involved initially, but as the buzz wears off and the drudge settles in, they lose patience and interest and move on to the next "cause" or energizing topic. If someone has a situation that can't be resolved in a few days or, if you're lucky, weeks, people move on. Well, everyone except the person living the issue.
On many levels I can understand. Time passes for you and you've moved on, so it is hard to understand that, for some people, time doesn't move on so easily. For anyone dealing with a chronic illness, or even a chronic divorce (lol), or any sort of "not easily resolved" situation, the pain, and pressure, and stress, and worry doesn't wane. And until you are in that situation, you can never really understand how it feels.
I don't expect people to "get it" and I am not overly angry at that teacher for his gruff and insensitive comments to L yesterday. This is hard and exhausting for the people closest to L (so, yeah, try BEING L...) so I know outsiders are going to have a harder time understanding that, for us, time has stood still for now while we try to deal with day-to-day concerns while struggling to keep a positive, long term outlook. I do get a little frustrated because ill-timed comments make OUR lives more difficult when it comes to keeping L's chin up, but... yeah.
I am, however, red-rage angry at one individual, who appears to have bookended his 3 years of lawsuits by completely checking out during L's two biggest challenges of her life. And in 784 short days, maybe I will tell you, and him, all about that.
On we go.
And no, she didn't not finish her rough draft of her paper because she "didn't feel like it" when she got home from school, but thanks for asking.
I understand that what Lexi is dealing with is difficult for people to grasp. Perhaps some people think she should just be able to suck it up and push through.
So let me try and put it in terms everyone can understand:
Try living without using your brain.
If you hurt your ankle, you can use crutches. You can stay off of it. You can use a wheel chair. You can still get around without using that ankle. It might be awkward, but it's doable.
Try reading without using your eyes or brain.
If you hurt your shoulder, you can use your other arm and put that arm in a sling. It might be awkward because it might be your dominant arm, but you can still function.
Try memorizing information without using your eyes or brain.
Now, tear a hamstring. Rest it for a few days. Is it better yet? Why aren't you out running on it? Why aren't you pushing through it? When is that hamstring going to feel better?!
I've realized that, maybe thanks to our sound bite, story-of-the-minute filled world, many people have no staying power. They are all energized and involved initially, but as the buzz wears off and the drudge settles in, they lose patience and interest and move on to the next "cause" or energizing topic. If someone has a situation that can't be resolved in a few days or, if you're lucky, weeks, people move on. Well, everyone except the person living the issue.
On many levels I can understand. Time passes for you and you've moved on, so it is hard to understand that, for some people, time doesn't move on so easily. For anyone dealing with a chronic illness, or even a chronic divorce (lol), or any sort of "not easily resolved" situation, the pain, and pressure, and stress, and worry doesn't wane. And until you are in that situation, you can never really understand how it feels.
I don't expect people to "get it" and I am not overly angry at that teacher for his gruff and insensitive comments to L yesterday. This is hard and exhausting for the people closest to L (so, yeah, try BEING L...) so I know outsiders are going to have a harder time understanding that, for us, time has stood still for now while we try to deal with day-to-day concerns while struggling to keep a positive, long term outlook. I do get a little frustrated because ill-timed comments make OUR lives more difficult when it comes to keeping L's chin up, but... yeah.
I am, however, red-rage angry at one individual, who appears to have bookended his 3 years of lawsuits by completely checking out during L's two biggest challenges of her life. And in 784 short days, maybe I will tell you, and him, all about that.
On we go.
UPMC trip #2
I haven't had time to write, so I'm just gonne post the update I sent to L's school. More later.
That was a very quick and intense trip. And cold. Really really cold. Lexi should be completely worthless today in school, btw :-/
The good:
1. It snowed.
2. Lexi’s scores on the IMPACT test rose from a month ago in most of the measures. They are not where they should or will be when she is fully recovered, but they are trending in the correct direction.
3. The UMPC team identified the migraine component as the #1 issue, followed closely by vestibular and ocular. So, they adjusted her rehab and recovery protocols a bit to address that (see, also, “the bad”) and so she has a new set of exertion exercises and a modified set of vestibular exercises and we will continue with the neck PT.
4. They were thrilled with all the flexibility and accommodations provided by Bolles, and encouraged Lexi to be more diligent in taking short rest breaks BEFORE her headache reaches skull splitting levels.
5. They believe that Lexi is caught in a migraine cycle, so they are starting her on Amantadine, which has been showing promise in treatment of PCS in adolescents, specifically headache, fogginess, fatigue, and concentration issues. It takes 5 days to get up to full dose and we should know pretty quickly if it is working.
The bad (well, depending on your perspective):
1. They admired and appreciated how hard Lexi was pushing it but strongly believe she is overdoing it, which is in turn miring her in the migraine cycle and slowing her improvement. They seemed happy with the school things, although they are not happy her grades are lower than normal (meaning the symptoms are still too prevalent and disruptive). As I mentioned, they REALLY want her to control the headache level better during the day. So, if she closes her eyes and fades out for a few mins during class, please don’t think she is being disrespectful or falling asleep (well, other than today. She may be falling asleep today lol).
2. They also shut her down from swimming for all except a few hundred yards that don’t involve head movement. They feel that swimming is the most challenging sport to return to after a vestibular system injury, and that by doing so she is over-taxing her system and preventing improvement. It took Dr. Collins talking to her several times and me translating in both directions for her to at least outwardly accept that this is not punishment or, in teen speak “stupid”.
The ugly:
1. We go back for appointments on March 10 and 11th, which means we fly out the night of the 9th, aka the day Christi and I drive back from a big meet in Nashville. Between 6a and 11pm I will zip from Nashville to Jacksonville to Baltimore to Pittsburgh. Then Christi has surgery on her feet the day after we get back (go ahead, laugh… it’s ok…).
2. My discover card balance. :’{
On we go.
13 February 2015
10 weeks and counting
It will be ten weeks, tomorrow, since L punched, er, kicked, her ticket back to PCS-ville. The question of the week is, of course: "is she getting any better?" It is, surprisingly, a quantifiable thing to answer in some ways, yet extremely subjective in others.
How can we quantify it?
1. L will re-take the IMPACT test when we return to Pitt Tuesday. This is a test given pre and post concussion to measure things like recall, retention, speed of processing etc. Theoretically, an athlete has taken this test prior to the season (called a baseline test) and then, in the event of a TBI, can retake it to give physicians some guidance as to the extent of the "damage" cognitively. Some schools do this, some do not.
L has never had a pre-concussion baseline, but she does have one quasi baseline from when she was 12 (post two concussions but theoretically recovered from both). She took the test again a couple of weeks after this incident, and the results were ugly. She re-took the test a few weeks later at Pitt, but I somehow have not gotten those results yet. When she retakes it Tuesday there will be three measures, each spaced about a month apart, to illustrate what progress is being made and what deficits still remain.
2. Vestibular and ocular assessments: for example, tests to measure at what point her eyes lose focus and see double and to measure eye movement and it's relationship to symptom increase.
I'd say, under normal circumstances, performance on scholastic assessments (quizzes, tests, midterms) would also provide a quantifiable measure, but I think it requires more than a half a quarter of production to really look at that.
How can we subjectively measure it?
1. How much is L doing and how does she feel doing it? L reports some pretty nasty symptom outcomes on almost a daily basis. BUT, she is also tackling more and more on 50% of the days. (I believe that that then impairs the other 50%, but there is only so much control I can exert over her when she is at school... ultimately, it is on HER to be intelligent and push it but not overdo it. That may be too much to ask of a highly driven, proud, intense 15 yo with an impaired brain.)
She has taken, and somehow passed, two of her four midterms she has to make up. She seems to be holding at a steady C+/B- range for her tests and quizzes this quarter (a full grade or more below her usual averages, but better than I'd expected...). She is doing these things on minimal studying, since focus and concentration and recall are all still very affected.
She has been all over the place swimming-wise, and what she does is very dependent on how beaten up she is from the school day. Since some days start with 7a physical therapy and end with tutoring, she is not always up for pushing through the pain and nausea to swim. She's actually swimming more than UPMC prescribed, plus doing all the other exercises and rehab.
She seems to be attempting more homework in a fairly timely fashion. She's got a draft of an essay due Tuesday, which will not be very fun for any of us (L puts a lot of pressure on herself under the best of circumstances... when words and ideas are not flowing... let's just say it could be a long weekend...). She's not taking as much extra time on assessments and such as I would a) like or b) think she would, in part because she is too damn stubborn to rest the way she is supposed to so as to stay below migraine level.
2. How is her demeanor? At times throughout this mess she has been hilariously funny (sometimes even intentionally so). At other times she has had the disposition of the mama water moccasin we stumbled on on the trail last summer who told us in VERY. CLEAR. snake language to back the hell away from her babies and move along, quickly. And sometimes I wonder if she is just completely emotionally flat lined. The moments of feeling very sorry for herself are amazingly few. But the moments where her frustration, pain, and/or boredom break out and punch me in the proverbial face are not all that few. I... think ... that the trend has been towards a brighter persona, but frankly I'm too close to the fire to really have great perspective on that one. I try to apply what I learned waaaaaay back when I was 7 or so and my grandfather was dying from cancer: don't get too excited at the good days and don't freak out at the bad days (if I had a buck for every time we raced like lunatics to NY because that man was FOR SURE GOING TO DIE NOW during the two years he was sick, paying for college would be a breeze...). But, honestly, it's hard not to get a burst of optimism on the up swings and even harder not to just sit down and cry in despair on the down swings.
3. Has she started talking about future goals (ie swim meets, classes next year) yet? No. Nothing concrete. She had hoped to be swimming enough yardage consistently and to feel well enough to go to our big meet in Nashville in 3 weeks. I told her this week that she is not going and, while it did NOT go over well, I think she knows I am correct. She is still so photo and phono sensitive that there is no way she can handle a 3 day prelim/final meet, plus two 8+ hour car rides. It would also be wildly insulting, in M and my opinions, to all the people busting their butts on her behalf at school for her to skip two days of school for a swim meet right now. And, honestly, it would be wildly unfair to her sister, C, who is excited for this meet and who should not have to spend her last short course championship meet before college in silence, which is how the car ride and hotel would be at all times were L to attend the meet.
She also does not have any goals academically other than survival. The young lady who holds herself to high standards academically is now more than happy to take a C. What any of this will mean for honors and AP classes in the future is unknown, and, frankly, irrelevant to me. It is not to her, but it is a sign of where she is that she is not actively talking about any concern she has right now.
So, that's the update right now. My gut says she is improving somewhat, but not in any sense quickly. I suppose she could live the rest of her life like this and ostensibly function fine to the outsider's eye, but I don't know how long she can push herself and deal with the miserable consequences of doing much of even simple things. Chronic pain changes people. It changes personalities, and attitudes, and even futures. We'll never have a control group to know what "might have been" had L not gotten these TBIs, and I try not to dwell on it (because it makes me want to puke, or cry, or punch something, or some unattractive combo of all three), but it is always there in the back of my mind.
That's why the support, encouragement, and kindness of people is so very important to L (and to me). And why the absence of it from some people makes me so. very. angry (yes, Captain Ahab, I'm talking about you...) I've always tried to be a thoughtful person and to keep other's situations in mind and reach out, even just by text, to check on them. It doesn't take much effort, but it does take awareness of things and people around you. And I guess it takes making the other person important enough to you. But, I digress.
Were it not for her school, we would be in trouble. Not any one person, but pretty much ALL of the people involved in this situation over there.
- the academic dean who came into our meeting having read my emails and ready with a fluid plan to help L catch up and keep up
- the head of the upper school who has been incredibly supportive and communicative
- L's fantastic advisor who has to be one of the most insightful, thoughtful, and caring people I know, who has spent an inordinate amount of time coordinating and communicating on L's behalf, checking on L, being proactive to help create an environment as conducive to L's success as anyone can create, and even bought an inspirational piece of art for L that eerily mirrored the quote on L's phone
- L's teachers who are a wildly diverse yet uniformly caring bunch (even the gruff one) and who, on a daily basis, say and do things that make me cry tears of thankfulness... from grading with kid gloves to telling her inspirational stories to making her feel very, very cared about.
-L's coach, who has been patient and kind and sarcastic and teasing and generally a whirlwind of making L laugh and feel visible, who will take the time to make up and text mini workouts for her on a Sunday morning or to brainstorm ways to keep her feeling like part of the team.
My parents, who always seem to find something cute or thoughtful to send down to help cheer L up, and my sister and her family, who always take the time to text or email just to check in and see how the day went. M's mom, who calls to check on L frequently. Some unexpected support and friendship from people who have dealt with major children-related health issues. Kind words from distant facebook friends, especially Bret, who has a special understanding of L's world. Without you all... I just don't know.
And of course, the ever steady, every loving, ever positive M (and the ever noisy, fiercely loyal and well meaning C, lol)... our family is as strong as it is because of you. Some men were born to be fathers.
To the people on Team L, I can never repay you guys. But if you ever need us, our family WILL be there.
Off to Pitt and UPMC in a couple of days. On we go.
How can we quantify it?
1. L will re-take the IMPACT test when we return to Pitt Tuesday. This is a test given pre and post concussion to measure things like recall, retention, speed of processing etc. Theoretically, an athlete has taken this test prior to the season (called a baseline test) and then, in the event of a TBI, can retake it to give physicians some guidance as to the extent of the "damage" cognitively. Some schools do this, some do not.
L has never had a pre-concussion baseline, but she does have one quasi baseline from when she was 12 (post two concussions but theoretically recovered from both). She took the test again a couple of weeks after this incident, and the results were ugly. She re-took the test a few weeks later at Pitt, but I somehow have not gotten those results yet. When she retakes it Tuesday there will be three measures, each spaced about a month apart, to illustrate what progress is being made and what deficits still remain.
2. Vestibular and ocular assessments: for example, tests to measure at what point her eyes lose focus and see double and to measure eye movement and it's relationship to symptom increase.
I'd say, under normal circumstances, performance on scholastic assessments (quizzes, tests, midterms) would also provide a quantifiable measure, but I think it requires more than a half a quarter of production to really look at that.
How can we subjectively measure it?
1. How much is L doing and how does she feel doing it? L reports some pretty nasty symptom outcomes on almost a daily basis. BUT, she is also tackling more and more on 50% of the days. (I believe that that then impairs the other 50%, but there is only so much control I can exert over her when she is at school... ultimately, it is on HER to be intelligent and push it but not overdo it. That may be too much to ask of a highly driven, proud, intense 15 yo with an impaired brain.)
She has taken, and somehow passed, two of her four midterms she has to make up. She seems to be holding at a steady C+/B- range for her tests and quizzes this quarter (a full grade or more below her usual averages, but better than I'd expected...). She is doing these things on minimal studying, since focus and concentration and recall are all still very affected.
She has been all over the place swimming-wise, and what she does is very dependent on how beaten up she is from the school day. Since some days start with 7a physical therapy and end with tutoring, she is not always up for pushing through the pain and nausea to swim. She's actually swimming more than UPMC prescribed, plus doing all the other exercises and rehab.
She seems to be attempting more homework in a fairly timely fashion. She's got a draft of an essay due Tuesday, which will not be very fun for any of us (L puts a lot of pressure on herself under the best of circumstances... when words and ideas are not flowing... let's just say it could be a long weekend...). She's not taking as much extra time on assessments and such as I would a) like or b) think she would, in part because she is too damn stubborn to rest the way she is supposed to so as to stay below migraine level.
2. How is her demeanor? At times throughout this mess she has been hilariously funny (sometimes even intentionally so). At other times she has had the disposition of the mama water moccasin we stumbled on on the trail last summer who told us in VERY. CLEAR. snake language to back the hell away from her babies and move along, quickly. And sometimes I wonder if she is just completely emotionally flat lined. The moments of feeling very sorry for herself are amazingly few. But the moments where her frustration, pain, and/or boredom break out and punch me in the proverbial face are not all that few. I... think ... that the trend has been towards a brighter persona, but frankly I'm too close to the fire to really have great perspective on that one. I try to apply what I learned waaaaaay back when I was 7 or so and my grandfather was dying from cancer: don't get too excited at the good days and don't freak out at the bad days (if I had a buck for every time we raced like lunatics to NY because that man was FOR SURE GOING TO DIE NOW during the two years he was sick, paying for college would be a breeze...). But, honestly, it's hard not to get a burst of optimism on the up swings and even harder not to just sit down and cry in despair on the down swings.
3. Has she started talking about future goals (ie swim meets, classes next year) yet? No. Nothing concrete. She had hoped to be swimming enough yardage consistently and to feel well enough to go to our big meet in Nashville in 3 weeks. I told her this week that she is not going and, while it did NOT go over well, I think she knows I am correct. She is still so photo and phono sensitive that there is no way she can handle a 3 day prelim/final meet, plus two 8+ hour car rides. It would also be wildly insulting, in M and my opinions, to all the people busting their butts on her behalf at school for her to skip two days of school for a swim meet right now. And, honestly, it would be wildly unfair to her sister, C, who is excited for this meet and who should not have to spend her last short course championship meet before college in silence, which is how the car ride and hotel would be at all times were L to attend the meet.
She also does not have any goals academically other than survival. The young lady who holds herself to high standards academically is now more than happy to take a C. What any of this will mean for honors and AP classes in the future is unknown, and, frankly, irrelevant to me. It is not to her, but it is a sign of where she is that she is not actively talking about any concern she has right now.
So, that's the update right now. My gut says she is improving somewhat, but not in any sense quickly. I suppose she could live the rest of her life like this and ostensibly function fine to the outsider's eye, but I don't know how long she can push herself and deal with the miserable consequences of doing much of even simple things. Chronic pain changes people. It changes personalities, and attitudes, and even futures. We'll never have a control group to know what "might have been" had L not gotten these TBIs, and I try not to dwell on it (because it makes me want to puke, or cry, or punch something, or some unattractive combo of all three), but it is always there in the back of my mind.
That's why the support, encouragement, and kindness of people is so very important to L (and to me). And why the absence of it from some people makes me so. very. angry (yes, Captain Ahab, I'm talking about you...) I've always tried to be a thoughtful person and to keep other's situations in mind and reach out, even just by text, to check on them. It doesn't take much effort, but it does take awareness of things and people around you. And I guess it takes making the other person important enough to you. But, I digress.
Were it not for her school, we would be in trouble. Not any one person, but pretty much ALL of the people involved in this situation over there.
- the academic dean who came into our meeting having read my emails and ready with a fluid plan to help L catch up and keep up
- the head of the upper school who has been incredibly supportive and communicative
- L's fantastic advisor who has to be one of the most insightful, thoughtful, and caring people I know, who has spent an inordinate amount of time coordinating and communicating on L's behalf, checking on L, being proactive to help create an environment as conducive to L's success as anyone can create, and even bought an inspirational piece of art for L that eerily mirrored the quote on L's phone
- L's teachers who are a wildly diverse yet uniformly caring bunch (even the gruff one) and who, on a daily basis, say and do things that make me cry tears of thankfulness... from grading with kid gloves to telling her inspirational stories to making her feel very, very cared about.
-L's coach, who has been patient and kind and sarcastic and teasing and generally a whirlwind of making L laugh and feel visible, who will take the time to make up and text mini workouts for her on a Sunday morning or to brainstorm ways to keep her feeling like part of the team.
My parents, who always seem to find something cute or thoughtful to send down to help cheer L up, and my sister and her family, who always take the time to text or email just to check in and see how the day went. M's mom, who calls to check on L frequently. Some unexpected support and friendship from people who have dealt with major children-related health issues. Kind words from distant facebook friends, especially Bret, who has a special understanding of L's world. Without you all... I just don't know.
And of course, the ever steady, every loving, ever positive M (and the ever noisy, fiercely loyal and well meaning C, lol)... our family is as strong as it is because of you. Some men were born to be fathers.
To the people on Team L, I can never repay you guys. But if you ever need us, our family WILL be there.
Off to Pitt and UPMC in a couple of days. On we go.
Subscribe to:
Posts (Atom)