Brian Burt's Blog: Work in Progress - Posts Tagged "pandas"

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.

Very early in my foray into blogging, I posted about the way the nonfiction book Saving Sammy: Curing the Boy Who Caught OCD changed the pretty dismal trajectory of my oldest son's treatment regimen for a traumatic, and newly recognized, class of childhood illnesses grouped under the category of PANS. Thankfully, things have improved fairly dramatically over the past decade (since my son first became ill), and the treatment options for afflicted children nowadays are much improved. But kids, and families, still face uphill battles when pursuing a PANS diagnosis, and they still are exposed to skepticism and disregard from some portions of the medical community that is absolutely unconscionable. It turns a traumatic situation into complete torture for far too many suffering children and families.

Fortunately, there are brave and tireless parent advocates who keep rattling the cages of the medical establishment, government, and the health insurance industry. In my neck of the woods, a wonderful example of this is the Great Lakes
PANDAS/PANS Association and their upcoming charity auction to raise money for the cause. This is part of the national movement to mark the annual celebration of PANDAS / PANS Awareness Day.

I can't emphasize enough how terrible this class of illnesses is for affected kids and their families. And, likewise, I can't possibly commend the organizers of these charity fundraising events enough to do them justice. They are, literally, saving lives, or without question quality of lives. If you live near an event organized for families affected by PANDAS, PANS, or Lyme Disease, I wholeheartedly encourage you to show them whatever support you can.

Fiction transports us, but the cruel realities of the world in which we live sometimes trivializes any message we seek to convey through fictional stories. The stories of real torment, and courage, and triumph of children with PANS are more inspiring than anything a writer can concoct. Celebrate that victory over an illness that sets children's brains on fire but can ultimately be quenched with the help of sympathetic doctors and parents who refuse to surrender to the status quo!

#SFWApro