Brian Burt's Blog: Work in Progress, page 10
May 20, 2013
"Saving Sammy" Saves Us
There is no feeling worse as a parent than seeing your child suffer and feeling utterly powerless to help. My wife and I experienced that several years ago, when our oldest son came home from school with a raging fever, aching and shaking. The school told us that flu was rampant, so we assumed that's what he had. After three days, the fever broke, and he seemed to recover. Then, a few weeks later, he started complaining about joint pain that migrated from joint to joint, followed by muscle weakness and difficulty walking. He had always been a very healthy kid, and we were baffled. And scared.
As the weeks passed, new and more frightening symptoms emerged: neurological, psychiatric, and shadings in between. Seizure-like episodes put him in the ER five times in a month. We were bounced back and forth between different specialists, none of whom seemed to know what to do. Those appointments took time to get... and in the intervals between them, things spiraled downward. I took FMLA leave, because our son was so ill that one parent alone couldn't take care of him. Our other two boys were terrified. Our entire family's lives turned upside down.
Ultimately, we discovered that our son had a rare (and controversial) autoimmune disorder called PANDAS: essentially, "rheumatic fever of the brain." It's very new, only officially named a little over a decade ago. There is no "standard of care" for treating it, and in fact different camps in the medical community are still fighting over what causes it or whether it even exists. We knew better. We were living with it, and our son was trapped in a nightmare world where few local doctors were willing to tread. That was, without doubt, the most emotionally draining, desperate moment of my life.
Thank god for the internet. We found a community of other parents and their kids who were going through the same devastating experience all over the country (and the world). They pointed us at the out-of-state specialists who were willing and able to offer treatment options to PANDAS children. And they introduced us to a newly released book intended to inspire and inform parents in our situation: Saving Sammy: Curing the Boy Who Caught OCD.
I pre-ordered the book and devoured it as soon as it arrived. I spoke on the phone with the author, Beth Maloney, and traded e-mails with her, desperate for words of hope. She offered them, graciously, and gave me the precious gift of her son Sammy's story. Sammy had been an extreme case, like our son: what some PANDAS experts term the "exorcist syndrome" where the child sinks into a hell of brain inflammation that consumes their core personality, rendering them unrecognizable. Beth did not give up on Sammy, despite the advice of many doctors, and ultimately found the real cause of his illness. And the path to a cure. We followed the treatment regimen that had worked for Sammy, and miracle of miracles, our son began coming back to us.
Not long ago, Sammy Maloney - a boy once far too ill to even consider attending school - graduated from a prestigious university. Our own son is now back to school as well: although he has not yet fully recovered, Sammy's story gives us cause for optimism. Did "Saving Sammy" save my son's life, and the lives of similarly afflicted children around the globe, by calling attention to this cruel disorder? I can't say for sure. But it definitely saved his quality of life, and that's enough.
I still get emotional thinking about the "nightmare times" before that book arrived and changed everything for us. Very few books have this kind of power. Those that do should be treasured.
As the weeks passed, new and more frightening symptoms emerged: neurological, psychiatric, and shadings in between. Seizure-like episodes put him in the ER five times in a month. We were bounced back and forth between different specialists, none of whom seemed to know what to do. Those appointments took time to get... and in the intervals between them, things spiraled downward. I took FMLA leave, because our son was so ill that one parent alone couldn't take care of him. Our other two boys were terrified. Our entire family's lives turned upside down.
Ultimately, we discovered that our son had a rare (and controversial) autoimmune disorder called PANDAS: essentially, "rheumatic fever of the brain." It's very new, only officially named a little over a decade ago. There is no "standard of care" for treating it, and in fact different camps in the medical community are still fighting over what causes it or whether it even exists. We knew better. We were living with it, and our son was trapped in a nightmare world where few local doctors were willing to tread. That was, without doubt, the most emotionally draining, desperate moment of my life.
Thank god for the internet. We found a community of other parents and their kids who were going through the same devastating experience all over the country (and the world). They pointed us at the out-of-state specialists who were willing and able to offer treatment options to PANDAS children. And they introduced us to a newly released book intended to inspire and inform parents in our situation: Saving Sammy: Curing the Boy Who Caught OCD.
I pre-ordered the book and devoured it as soon as it arrived. I spoke on the phone with the author, Beth Maloney, and traded e-mails with her, desperate for words of hope. She offered them, graciously, and gave me the precious gift of her son Sammy's story. Sammy had been an extreme case, like our son: what some PANDAS experts term the "exorcist syndrome" where the child sinks into a hell of brain inflammation that consumes their core personality, rendering them unrecognizable. Beth did not give up on Sammy, despite the advice of many doctors, and ultimately found the real cause of his illness. And the path to a cure. We followed the treatment regimen that had worked for Sammy, and miracle of miracles, our son began coming back to us.
Not long ago, Sammy Maloney - a boy once far too ill to even consider attending school - graduated from a prestigious university. Our own son is now back to school as well: although he has not yet fully recovered, Sammy's story gives us cause for optimism. Did "Saving Sammy" save my son's life, and the lives of similarly afflicted children around the globe, by calling attention to this cruel disorder? I can't say for sure. But it definitely saved his quality of life, and that's enough.
I still get emotional thinking about the "nightmare times" before that book arrived and changed everything for us. Very few books have this kind of power. Those that do should be treasured.
May 12, 2013
Happy to Be Here!
I'm a new member of Goodreads who joined in the hope of finding a community of like-minded people who still find time to enjoy a good book (and, candidly, in the hope of introducing them to my first novel, Aquarius Rising - In the Tears of God, a science fiction tale inspired by the potential dire consequences of climate change). So far, it's been a great experience. I found and joined a Goodreads group, The Green Group, that focuses on sustainable living and environmental issues, areas that are close to my own heart. I've already learned some fascinating things there and wanted to share one of them.
A new documentary was recently released (free on YouTube) by author and environmental activist Bill McKibben and his colleagues at 350.org. This roughly 45-minute film is eye-opening and well worth a watch:
Do the Math - The Movie
I believe this documentary should be a wake-up call for all of us who worry about what kind of world we will bequeath to future generations. It inspired me to join 350.org as well as put Mr. McKibben's The End of Nature on my personal to-read list. If you sometimes agonize over the possible implications of climate change but feel powerless to affect the trend, watch the video: it will empower you!
And I'd also recommend another book from my personal bookshelf: Our Angry Earth: A Ticking Ecological Bomb. I read this when it first came out in the early 1990's and remember it inspiring much angst but also great passion. I hope it does the same for you.
I'm a Goodreads newbie, but I'm really enjoying the chance to become an active part of this community. Thanks for welcoming me! And, if you're interested, feel free to check out my guest blog on author Tony-Paul de Vissage's web site discussing how climate change inspired my own writing efforts.
A new documentary was recently released (free on YouTube) by author and environmental activist Bill McKibben and his colleagues at 350.org. This roughly 45-minute film is eye-opening and well worth a watch:
Do the Math - The Movie
I believe this documentary should be a wake-up call for all of us who worry about what kind of world we will bequeath to future generations. It inspired me to join 350.org as well as put Mr. McKibben's The End of Nature on my personal to-read list. If you sometimes agonize over the possible implications of climate change but feel powerless to affect the trend, watch the video: it will empower you!
And I'd also recommend another book from my personal bookshelf: Our Angry Earth: A Ticking Ecological Bomb. I read this when it first came out in the early 1990's and remember it inspiring much angst but also great passion. I hope it does the same for you.
I'm a Goodreads newbie, but I'm really enjoying the chance to become an active part of this community. Thanks for welcoming me! And, if you're interested, feel free to check out my guest blog on author Tony-Paul de Vissage's web site discussing how climate change inspired my own writing efforts.
Work in Progress
Random musings from a writer struggling to become an author.
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