I worked 2 years in private practice, 2 for an HMO, and 3 for the VA; which is a government run, basically socialized medicine program. As a physician, I feel greater freedom in the VA to make my own decisions that I did in the private sector. I felt the insurance companies breathe down my neck more than the government does. I also see that the government monitors the quality of our outcomes, They reward us for improved blood pressure, and light a fire under us about poorly controlled diabetics. My other settings NEVER monitored that…they only monitored the money.
It is a fallacy to think that doctors in America control their decisions right now. As a profession we gave up our decision making when we began allowing the 3rd party payer system. I will attest that I have much more control over my decisions as a physician, working for the VA, than I ever did in the private sector. Insurance companies controlled my decisions more than the VA does.
Insurance companies do not care about the health of their policy owners. They care about profit. Capitalistic medicine is driven by money, federal healthcare by positive outcomes.
Voters have more control over their government than consumers do over private insurance companies. Who do people want to be in control of their doctors? For-profit companies, or a democratic government that answers to them? We ARE the nation. We are the voters. We have the power to change government because we have the right to vote. We do not have control over our insurance companies -- they are privately owned.
I do not understand the resistance to healthcare reform. Our country is not 100% capitalists. Water, sewer, fire, police, Pell grants, the Army…and so on. We pay our governments to provide services. These services are not for profit, but they could be if we wanted them to. Why does healthcare have to be for profit any more than city water? Why not privatize the armed forces? People would find these suggestions absurd. Of course we want the government to manage these public concerns. should not be for profit. Public health is more philosophically pure and more in keeping with the Hippocratic oath. You want your doctor to make decisions based on your health, not on profit.
The capilazation of medicine is not sacred.
Sunday, September 27, 2009
Grand Rapids ArtPrize 2009
We spent the day at the ArtPrize today. It was so much larger than I ever imagined. It is hard to describe how huge this thing is, it is impossible to comprehend unless you go yourself, and even when you go yourself, it is still hard to fathom the immensity of this event
We started at the Riverview Building. It is next to the fish ladder, on the corner by the 6th street bridge. Within the Riverview Building alone there are 50 artists. Sandy’s WHAT art club had their contribution there, so that was where we started. Then we reviewed the rest of the art in the building; phenomenal paintings in multi-media, sculptures of light and form, one artist who did a complex tribute to 9/11. He told me he was on the street when it happened, and was trapped for two days. It still haunts him, and he tries to heal through art.
Then to another building, then to art in the streets and on the sidewalk, then to another building, then to art in parking lots and in tents and in parks. Huge sculptures that I hope the city bought to keep and lawn paintings, and art in the river; a large mobile on an island, and a sculpture by the fish ladder called “Nessie.” (The scuplutre was called Nessie, not the fish ladder.) You assume correctly; it is supposed to be a Loch Ness monstor representation.
Art that tried to make a statement, like the ton of compressed smelly plastic trash in cubes, creating a maze. The billowing globe with a recording playing about how global warming is a farce. (Of course I think that’s moronic. Yes, we landed on the moon, yes, there was a holocaust, and yes, there is global warming.) There was another artist who thought that the “Green Movement” was just propaganda by the capitalist to try to make more money, and a part of his display was surveying the passer bys. I told him I thought that capitalists have fallen short in any attempt to make money off the green movement, that it should be the next big thing, but we have not seen anything yet, and it was the lack of capitalist interest in anything green because oil is cheap and easy, that has caused this environmental problem.
Really. I said all that too him. I don’t think he liked it.
There was a performance artist who melted glass pop bottles and draped the melting glass in a net. There was a “Grand Rapids Family Tree” for you to write your name or sentiments on a ribbon, and tie it on the “tree.” Quite nice, actually; very colorful. There was a performance artist who’s performance was to paint oils painting of posing models while he and his brother sang and played musical instruments simultaneously.
There were sculptures everywhere. One of the most amazing pieces was the giant chairs and table by wicks (very similar to Sandy’s work.) The table and chairs is 4000 pounds, and rests on top of one of the pedestrian bridges across the Grand. It sets as a crown on top of the bridge.
The display that caused me the most pause, the one that I had a hard time pulling myself away from, was the juxtaposition of two paintings; one of Abraham Lincoln holding a wounded soldier on a Civil War battlefield, next to one of President Obama, our first black president. Either painting alone was beautiful piece of work. It was the juxtaposition that caused the pause.
The bottom line is, there was such a large volume of art and such a wide diversity of media that you literally cannot see it all in one day. If you live in the area, you need to come see it. It is mind-boggling.
We started at the Riverview Building. It is next to the fish ladder, on the corner by the 6th street bridge. Within the Riverview Building alone there are 50 artists. Sandy’s WHAT art club had their contribution there, so that was where we started. Then we reviewed the rest of the art in the building; phenomenal paintings in multi-media, sculptures of light and form, one artist who did a complex tribute to 9/11. He told me he was on the street when it happened, and was trapped for two days. It still haunts him, and he tries to heal through art.
Then to another building, then to art in the streets and on the sidewalk, then to another building, then to art in parking lots and in tents and in parks. Huge sculptures that I hope the city bought to keep and lawn paintings, and art in the river; a large mobile on an island, and a sculpture by the fish ladder called “Nessie.” (The scuplutre was called Nessie, not the fish ladder.) You assume correctly; it is supposed to be a Loch Ness monstor representation.
Art that tried to make a statement, like the ton of compressed smelly plastic trash in cubes, creating a maze. The billowing globe with a recording playing about how global warming is a farce. (Of course I think that’s moronic. Yes, we landed on the moon, yes, there was a holocaust, and yes, there is global warming.) There was another artist who thought that the “Green Movement” was just propaganda by the capitalist to try to make more money, and a part of his display was surveying the passer bys. I told him I thought that capitalists have fallen short in any attempt to make money off the green movement, that it should be the next big thing, but we have not seen anything yet, and it was the lack of capitalist interest in anything green because oil is cheap and easy, that has caused this environmental problem.
Really. I said all that too him. I don’t think he liked it.
There was a performance artist who melted glass pop bottles and draped the melting glass in a net. There was a “Grand Rapids Family Tree” for you to write your name or sentiments on a ribbon, and tie it on the “tree.” Quite nice, actually; very colorful. There was a performance artist who’s performance was to paint oils painting of posing models while he and his brother sang and played musical instruments simultaneously.
There were sculptures everywhere. One of the most amazing pieces was the giant chairs and table by wicks (very similar to Sandy’s work.) The table and chairs is 4000 pounds, and rests on top of one of the pedestrian bridges across the Grand. It sets as a crown on top of the bridge.
The display that caused me the most pause, the one that I had a hard time pulling myself away from, was the juxtaposition of two paintings; one of Abraham Lincoln holding a wounded soldier on a Civil War battlefield, next to one of President Obama, our first black president. Either painting alone was beautiful piece of work. It was the juxtaposition that caused the pause.
The bottom line is, there was such a large volume of art and such a wide diversity of media that you literally cannot see it all in one day. If you live in the area, you need to come see it. It is mind-boggling.
Chair a Bridge
Fabric Mosaic
Friday, September 25, 2009
The Restaurant at the End of the Universe
I think that The Restaurant at the End of the Universe (1980) was the weakest of the series, but a necessary read to get to Life, the Universe and Everything, which is fantastic. Not unlike the fact that let’s face it, folks, The Empire Strikes Back was a major yawn at best, but The Return of the Jedi was awesome; and Back to the Future II outright sucked and should not have only been made, as a ten-minute public service announcement so that we could properly enjoy Back to the Future III, which was at least as good as the first and in some ways even better.
That’s my opinion, anyway. You know what they say about opinions…or you do if you’ve read my earlier posts.
Zaphod sucking antidepressants off of Roosta’s towel isn’t nearly as funny as Adams thought it was, but maybe it was in 1980. No, I remember the 80's. I'm pretty sure it wasn't funny then, either. A cow that invites you to eat itself; the hyperbole of snooty people picking out their lobsters at snooty restaurants—maybe that is funny to you, but it didn’t really work for me. On the other hand, the “songs” in chapter 22 are brilliant.
The IDEA of the restaurant is much funnier than its execution. The fact that it was the closest place, temporally, which means Marvin was waiting millions of years…now that I thought was both brilliant and hilarious.
As far as literary quality, this is Adam’s weakest. As far as humor, the same. The rest of the series rocks.
Even though I dream of somday channeling Douglas Adams*, even though there are reasons why The Hitchiker's Guide is an important and ingenious breakthrough in SciFi/humor, there are weakness in this particular book in the series. In fact, this is the weakest of all of them. Sometimes I can forgive weakness in style for the sake of the humor, but in this book, the humor is not good enough to compensate for the literary weaknesses.
In pains me to give my hero less than a 90, but this book gets an 86.
My advice? Read it. Read it because the rest of the series is worth it.
*Adams and I are (were) both atheists, so find the likelihood that I will get to channel him to be somewhat slim, but given the opportunity, I would gladly do it anyway.
That’s my opinion, anyway. You know what they say about opinions…or you do if you’ve read my earlier posts.
Zaphod sucking antidepressants off of Roosta’s towel isn’t nearly as funny as Adams thought it was, but maybe it was in 1980. No, I remember the 80's. I'm pretty sure it wasn't funny then, either. A cow that invites you to eat itself; the hyperbole of snooty people picking out their lobsters at snooty restaurants—maybe that is funny to you, but it didn’t really work for me. On the other hand, the “songs” in chapter 22 are brilliant.
The IDEA of the restaurant is much funnier than its execution. The fact that it was the closest place, temporally, which means Marvin was waiting millions of years…now that I thought was both brilliant and hilarious.
As far as literary quality, this is Adam’s weakest. As far as humor, the same. The rest of the series rocks.
Even though I dream of somday channeling Douglas Adams*, even though there are reasons why The Hitchiker's Guide is an important and ingenious breakthrough in SciFi/humor, there are weakness in this particular book in the series. In fact, this is the weakest of all of them. Sometimes I can forgive weakness in style for the sake of the humor, but in this book, the humor is not good enough to compensate for the literary weaknesses.
In pains me to give my hero less than a 90, but this book gets an 86.
My advice? Read it. Read it because the rest of the series is worth it.
*Adams and I are (were) both atheists, so find the likelihood that I will get to channel him to be somewhat slim, but given the opportunity, I would gladly do it anyway.
Another Catatonic Day
April, 2009
Abby had a seizure at midnight. Seizures come on abruptly, are tonic-clonic (what used to be called Grand Mal) and start with a particular gasping type vocalization that we recognize immediately. When I awoke at 6:00 for work, and her light and TV were on, and she was staring blankly at the TV, I knew that this meant her internal body clock was screwed up. She had no idea what time of day it was, or even that this was a school day. It did not surprise me when I got home from work and learned from Sandy that Abby had another seizure at 7:00, and that she had spent the day essentially vocally non-responsive. She moves real slow on days like these. She cannot connect one word to the next in a sentence. She cannot independently follow one-step commands on these days. Sandy made her a bowl of ramen, and it took Abby 3 hours to eat it.
Days like this are why Sandy had to quit her doctoral program. She had finished all the coursework, and just needed to do the dissertation. One of us had to quit academia, and I was in medical school, which would lead to a more lucrative career than Sandy’s higher admin Ed.D. So sandy paints chairs and teaches an occasional class on ethics at Davenport.
We never know on these days if Abby will have more seizures, or how long these partial seizures will last. There is nothing we can do but stay on edge.
Abby had a seizure at midnight. Seizures come on abruptly, are tonic-clonic (what used to be called Grand Mal) and start with a particular gasping type vocalization that we recognize immediately. When I awoke at 6:00 for work, and her light and TV were on, and she was staring blankly at the TV, I knew that this meant her internal body clock was screwed up. She had no idea what time of day it was, or even that this was a school day. It did not surprise me when I got home from work and learned from Sandy that Abby had another seizure at 7:00, and that she had spent the day essentially vocally non-responsive. She moves real slow on days like these. She cannot connect one word to the next in a sentence. She cannot independently follow one-step commands on these days. Sandy made her a bowl of ramen, and it took Abby 3 hours to eat it.
Days like this are why Sandy had to quit her doctoral program. She had finished all the coursework, and just needed to do the dissertation. One of us had to quit academia, and I was in medical school, which would lead to a more lucrative career than Sandy’s higher admin Ed.D. So sandy paints chairs and teaches an occasional class on ethics at Davenport.
We never know on these days if Abby will have more seizures, or how long these partial seizures will last. There is nothing we can do but stay on edge.
Emotional Extremes and Epilepsy
May 2009
Abby is 19. Today we had her final IEP. Her teachers talked about how sweet she is, how kind and gentle she is. Then we had to focus on what is she capable of. She has poor stamina. She is not strong enough to open a pop-open can of chef Boyardee. She makes very few independent decisions, and require s frequent prompting. She moves very slowly. You would not believe it if I told you how slowly. So no, I do not think she is capable of work (not to mention seizures on the job). I see other handicapped people bagging groceries, and the like, and I think how fortunate are they, that they were skilled enough to be able to hold a job, and that someone loved them enough to train them and coach them. Unfortunately, during the meeting, I had a flashback of when Abby was normal. She was articulate, reading above grade level, and more independent than she is now. We absolutely knew grad school was in her future. You’d think after all these years, I’d be through with the grieving. But losing her potential is not a grieving can get over. I take care of her every day.
On the flipside, I have a 16 year old son who I couldn’t be prouder of. He is in a couple AP classes, and doing well. He takes fencing and skis in the winter. He is smart, athletic, and witty. He is going to be able to go to Europe with HS foreign language dept; France and Spain. He plans on going to WestPoint. (How ironic, me a pacifist, working for the VA, with a son heading to Westpoint)
I am not bipolar, but I feel like my life is. Such huge emotional extremes from my children.
This has not been one of my better days.
I will try to get back into the class this week.
I want to read Anne and Marge’s work, and give feedback. I want to do it thoughtfully, so I want to take time. in the meantime, I am also busy preparing for the next assignment . I am still studying Miki’s instructions on my last assignment. Actually, I’ve been through them all, just no time to rewrite accordingly. (for my own purposes, not for reposting).
I wish we had more than two weeks. I think by the weekend, I’ll be through this emotional turmoil, and will finally be caught up at work after taking a couple days of for family reasons. This class is one of my favorite outlets right now I’m sorry I haven’t contributed much lately.
Abby is 19. Today we had her final IEP. Her teachers talked about how sweet she is, how kind and gentle she is. Then we had to focus on what is she capable of. She has poor stamina. She is not strong enough to open a pop-open can of chef Boyardee. She makes very few independent decisions, and require s frequent prompting. She moves very slowly. You would not believe it if I told you how slowly. So no, I do not think she is capable of work (not to mention seizures on the job). I see other handicapped people bagging groceries, and the like, and I think how fortunate are they, that they were skilled enough to be able to hold a job, and that someone loved them enough to train them and coach them. Unfortunately, during the meeting, I had a flashback of when Abby was normal. She was articulate, reading above grade level, and more independent than she is now. We absolutely knew grad school was in her future. You’d think after all these years, I’d be through with the grieving. But losing her potential is not a grieving can get over. I take care of her every day.
On the flipside, I have a 16 year old son who I couldn’t be prouder of. He is in a couple AP classes, and doing well. He takes fencing and skis in the winter. He is smart, athletic, and witty. He is going to be able to go to Europe with HS foreign language dept; France and Spain. He plans on going to WestPoint. (How ironic, me a pacifist, working for the VA, with a son heading to Westpoint)
I am not bipolar, but I feel like my life is. Such huge emotional extremes from my children.
This has not been one of my better days.
I will try to get back into the class this week.
I want to read Anne and Marge’s work, and give feedback. I want to do it thoughtfully, so I want to take time. in the meantime, I am also busy preparing for the next assignment . I am still studying Miki’s instructions on my last assignment. Actually, I’ve been through them all, just no time to rewrite accordingly. (for my own purposes, not for reposting).
I wish we had more than two weeks. I think by the weekend, I’ll be through this emotional turmoil, and will finally be caught up at work after taking a couple days of for family reasons. This class is one of my favorite outlets right now I’m sorry I haven’t contributed much lately.
Yet Another Seizure in the Shower
Spring, 2009
Sandy had an art show, and Abby really needed a shower. So I told her to take one, and I would stay right out the door if she needed me. She called, and I went in. "What is it Abby?" She was six inches in front of me, and collapsed into a seizure. It just happens that fast. Six inches away, and the fall to the concrete is too fast for me to catch her. She crashed to the tile floor, and there was blood everywhere, washing down the drain with the flowing water. It looked like a scene from CSI.
Three inch gash right under her right eyebrow, deep. Past the muscle tissue. I called Ben, and his best friend Levi. They came up from the basement. Ben held her in place while Levi held a light so I could see what I was doing while I sutured her eyebrow in the shower. My hands don't normally shake while I suture, but the were this time. 8 sutures. It isn't the most plastic-surgeon worthy suturing I have ever done, but given the circumstances, I don't feel that I did too badly. I have her laying on ice to minimize the swelling, but her right upper lid is already quite swollen.
There is no time for modesty in situations like these. My twenty year old daughter with the mind of a 5 year old, wet and seizing, the seventeen-year old boys helping me with an unconscionable situation. They are not boys now, but respectable young men coming to a medical age with the respect and judgment worthy of any trained adult.
I have had to suture my daughter more times than I can remember. People tell me that god doesn’t give you more than you can bear, but they don’t know how unbearable this is. Please keep the platitudes to yourself. Everyday, I grieve the loss of what my daughter could have been. I don’t begrudge your right to believe in a god, but I find him or her hard to find through the density of this pain.
Sandy had an art show, and Abby really needed a shower. So I told her to take one, and I would stay right out the door if she needed me. She called, and I went in. "What is it Abby?" She was six inches in front of me, and collapsed into a seizure. It just happens that fast. Six inches away, and the fall to the concrete is too fast for me to catch her. She crashed to the tile floor, and there was blood everywhere, washing down the drain with the flowing water. It looked like a scene from CSI.
Three inch gash right under her right eyebrow, deep. Past the muscle tissue. I called Ben, and his best friend Levi. They came up from the basement. Ben held her in place while Levi held a light so I could see what I was doing while I sutured her eyebrow in the shower. My hands don't normally shake while I suture, but the were this time. 8 sutures. It isn't the most plastic-surgeon worthy suturing I have ever done, but given the circumstances, I don't feel that I did too badly. I have her laying on ice to minimize the swelling, but her right upper lid is already quite swollen.
There is no time for modesty in situations like these. My twenty year old daughter with the mind of a 5 year old, wet and seizing, the seventeen-year old boys helping me with an unconscionable situation. They are not boys now, but respectable young men coming to a medical age with the respect and judgment worthy of any trained adult.
I have had to suture my daughter more times than I can remember. People tell me that god doesn’t give you more than you can bear, but they don’t know how unbearable this is. Please keep the platitudes to yourself. Everyday, I grieve the loss of what my daughter could have been. I don’t begrudge your right to believe in a god, but I find him or her hard to find through the density of this pain.
The Pain of Losing Your Daughter’s Mind
February, 2009
Until Abby was about seven, she was bright, precocious, pretty, charming, easily understood by strangers, and we fully expected her to become a medical doctor or an engineer. She had febrile seizures as an infant, but our doctor assured us that this was common, and 97% of all children grew out of this. At the end of the first grade, her teacher told us she was the brightest child she had ever had; far ahead in reading and math skills. She was cute and charming, strangers would often tell us “she ought to be in commercials.”
The summer before I began medical school, and Sandy was working on her doctorate, we bought a run-down house in a nice neighborhood in Louisville. Abby started having more seizures, and we were not always sure that they were associated with fever. By our third visit to the same ER doctor he knew us by face and first name, and he became justifiably angry with us for not taking her to a neurologist by then. We hadn’t because, after all, we knew she would grow out of it any day now. It was the beginning of a long road of denial. We had just begun the Elizabeth Kübler Ross’ stages with this disease. We have been through them all now.
For 8 months, she was well controlled on Dilantin, although it did cause some gingival hypertrophy. We finally adjusted to this. “Okay, she has epilepsy, but she is well controlled on meds, it is like any other disease that is controlled on meds.” Then, at the end of the first grade, she had a sleepover at a friend’s house, and they were up all night. Sleep deprivation is a common trigger for seizures. From that point on everything went downhill exponentially. Ultimately, Sandy had to give up her doctoral program. I stayed in med school, obviously. Our son who was 3 years younger than Abby got less attention than he deserved, regardless of the fact we continuously reminded ourselves not to do that to him. (He has turned out fine, and is well adjusted in spite of this.) We continued to remodel the house because we had little choice if we wanted to sell it at the end of med school.
From there, and through the next several years, Abby seizures steadily worsened. Her seizures are tonic-clonic, secondarily generalized (or what most people would call “grand mal”). She can be in the middle of a sentence and drop to the ground, convulsing. I’ve stitched her scalp at home twice, and her chin once, (and the chin once, by and ER doc). She lost her right upper incisor three times. The third time, it could no longer be replaced. As an older teenager, she went for over a year with that incisor missing, until we could finally get a permanent bridge.
We have tried every seizure medicine there is, in every combination, in every dose. She has been overdosed on seizure meds a few times, to the point that is like being with someone who is stoned. She only goes into status epilepticus about 4 or 5 times a year now, but it used to be more often. Status epilepticus is a seizure that lasts more than 5 minutes, or having several in a cluster, without recovery in-between, over the course of several hours. When this happens, we have a form of valium that we administered rectally in order to interrupt it.
We have tried Chinese herablists, faith healers, and a homeopath. She was on the ketogenic diet, and has a vagal nerve stimulator implanted. She was ruled out for brain surgery at two different time in two different cities, by two different neurosurgeons.
Now, on good days, she is hard to understand due to diction. She still has 3 or 4 seiures a week. She will be in a mental fog for hours or even days after a seziure. She can shower herself, but it took years to teach her that, and Sandy still has to help her sometimes. She can dress herself, but it takes her about an hour. There are a few snacks she can make herself with the microwave, but obviously, she is not allowed to use the stove. She talks and moves very slowly. She is in special Olympics bowling, but does not have the coordination to ride a bike or go skiing. She has a special recumbent three wheeler bike she enjoys. She lacks in physical stamina and normal strength for a girl her age. She watches Nickelodeon a lot, and Disney feature films. In the last couple of years, the meds have caused a horrible case of acne; one of the worst I have ever seen (after ten years of practicing family medicine, mind you), and I am sure it is going to scar her face.
Even after all these years, a sudden seizure can send the adrenaline rushing through our bodies, and having just two or three in the night can ruin a good night’ s sleep.
We know that she will never be able to live on her on. She is primarily a happy little girl, and good natured, for the most part. She is 19 now, although she is still 6 mentally and emotionally.
Until Abby was about seven, she was bright, precocious, pretty, charming, easily understood by strangers, and we fully expected her to become a medical doctor or an engineer. She had febrile seizures as an infant, but our doctor assured us that this was common, and 97% of all children grew out of this. At the end of the first grade, her teacher told us she was the brightest child she had ever had; far ahead in reading and math skills. She was cute and charming, strangers would often tell us “she ought to be in commercials.”
The summer before I began medical school, and Sandy was working on her doctorate, we bought a run-down house in a nice neighborhood in Louisville. Abby started having more seizures, and we were not always sure that they were associated with fever. By our third visit to the same ER doctor he knew us by face and first name, and he became justifiably angry with us for not taking her to a neurologist by then. We hadn’t because, after all, we knew she would grow out of it any day now. It was the beginning of a long road of denial. We had just begun the Elizabeth Kübler Ross’ stages with this disease. We have been through them all now.
For 8 months, she was well controlled on Dilantin, although it did cause some gingival hypertrophy. We finally adjusted to this. “Okay, she has epilepsy, but she is well controlled on meds, it is like any other disease that is controlled on meds.” Then, at the end of the first grade, she had a sleepover at a friend’s house, and they were up all night. Sleep deprivation is a common trigger for seizures. From that point on everything went downhill exponentially. Ultimately, Sandy had to give up her doctoral program. I stayed in med school, obviously. Our son who was 3 years younger than Abby got less attention than he deserved, regardless of the fact we continuously reminded ourselves not to do that to him. (He has turned out fine, and is well adjusted in spite of this.) We continued to remodel the house because we had little choice if we wanted to sell it at the end of med school.
From there, and through the next several years, Abby seizures steadily worsened. Her seizures are tonic-clonic, secondarily generalized (or what most people would call “grand mal”). She can be in the middle of a sentence and drop to the ground, convulsing. I’ve stitched her scalp at home twice, and her chin once, (and the chin once, by and ER doc). She lost her right upper incisor three times. The third time, it could no longer be replaced. As an older teenager, she went for over a year with that incisor missing, until we could finally get a permanent bridge.
We have tried every seizure medicine there is, in every combination, in every dose. She has been overdosed on seizure meds a few times, to the point that is like being with someone who is stoned. She only goes into status epilepticus about 4 or 5 times a year now, but it used to be more often. Status epilepticus is a seizure that lasts more than 5 minutes, or having several in a cluster, without recovery in-between, over the course of several hours. When this happens, we have a form of valium that we administered rectally in order to interrupt it.
We have tried Chinese herablists, faith healers, and a homeopath. She was on the ketogenic diet, and has a vagal nerve stimulator implanted. She was ruled out for brain surgery at two different time in two different cities, by two different neurosurgeons.
Now, on good days, she is hard to understand due to diction. She still has 3 or 4 seiures a week. She will be in a mental fog for hours or even days after a seziure. She can shower herself, but it took years to teach her that, and Sandy still has to help her sometimes. She can dress herself, but it takes her about an hour. There are a few snacks she can make herself with the microwave, but obviously, she is not allowed to use the stove. She talks and moves very slowly. She is in special Olympics bowling, but does not have the coordination to ride a bike or go skiing. She has a special recumbent three wheeler bike she enjoys. She lacks in physical stamina and normal strength for a girl her age. She watches Nickelodeon a lot, and Disney feature films. In the last couple of years, the meds have caused a horrible case of acne; one of the worst I have ever seen (after ten years of practicing family medicine, mind you), and I am sure it is going to scar her face.
Even after all these years, a sudden seizure can send the adrenaline rushing through our bodies, and having just two or three in the night can ruin a good night’ s sleep.
We know that she will never be able to live on her on. She is primarily a happy little girl, and good natured, for the most part. She is 19 now, although she is still 6 mentally and emotionally.
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