Hello! I am thrilled to bring you a special message from Anymom…the author behind the new PANS/PANDAS book: Shadow Syndromes. The subtitle of the book is “Shining a Light on PANS and Other Inflammation Based Illnesses Plaguing Today’s Youth”, and that is what the book does…shines a light. It illuminates minds about PANS, PANDAS, and other conditions. The Shadow Syndromes book is also a candle in the window…a flashlight in the dark…a cell phone light in your purse looking for your keys…a beacon of hope.
By writing the book from the perspective of being an anonymous Anymom, it shows that the PANDAS/PANS saga could happen to ANYBODY! Anymom is part of Anyfamily, living in Anytown, USA, and raising a little boy, Anychild. The author does a good job conveying the urgency, the hopelessness, and the hope that every PANDAS/PANS families goes through when they fall down the rabbit hole of this illness. The way we do so much research. The way we live in hyper-vigilance. The way we find our true friends and family and lose a few others. The criticism and scrutiny we go through all while trying to heal our children from this horrible illness that’s hard to explain and harder to understand if you’re not inside the belly of the beast. At the end, Anymom’s book also includes a few short Anystories from other Anyfamilies and a few helpful resources.
I got a chance to read an advance version of the book last spring and have a personal copy of the book. I was captivated by the story and could see my own story in Anymom’s story. I think any PANDAS/PANS family could relate YOU can buy Shadow Syndromes here or order the ebook. (NOTE: I am a participant in the Amazon affiliate program*. Thank you!) Now, here’s Anymom’s guest blog post….
Anymom’s Special Message to You:
Thank you to all of the Anyparents out there who have purchased (or will purchase) the book Shadow Syndromes: Shining a light on PANS and other Inflammation Based Illnesses Plaguing Today’s Youth. I wrote the book as ‘Anymom’ because it was a way for me to tell our story without opening our family (and our child!) up to even more scrutiny than we have already endured. Like you, I am just another parent wanting to scream the truth of PANS from the rooftops, while also wanting to hide our personal version of it away from the world the best I can. Shadow Syndromes has been my way of doing both at the same time.
Although Shadow Syndromes tells our story- it has been told in a way that can represent many of us… because if no one really knows who my Anyfamily is, it leaves the door open for the world to realize that the story I tell about Anychild, . . . could happen to any child….That is the whole point.
So, I hope curiosity about who I am can take a back seat, and that the book can be used as a resource for all PANS families (and other families whose children have different Shadow Syndromes) to stand together and move forward as a collective of the Anymoms and Anydads that we are- because let’s face it, there is a big dragon to slay …and none of us are going to do it on our own.
Below is an exerpt from the first installment in the ‘Anystories’ blog series that will begin soon on www.shadowsyndromes.com. I will be writing occasional blogs and will continue to use my voice for this cause, but ideally, the blog will be a place to let other parents tell their Anystories…because telling our stories is what will wake the world to the immutable, ever-present, ugly as hell truth of what PANS families go through day in and day out on this journey….
If you are interested in sharing your Anystory on the blog, use the contact form on the site (www.shadowsyndromes.com) to let me know, and I will be in touch as the format for moving forward with the blog emerges.
An Anystory about Gazelles and Crocodiles
My Anychild runs like a gazelle. He can boot a soccer ball the length of the field and in a footrace, he is the kid who always has that last little bit of kick left in him to sprint across the finish line in first place. He is quirky and funny, obnoxious and bright.
He leaves an impression on people—the same kind of impression that many healthy, thriving, rambunctious little boys leave. We are grateful for the charade. It keeps life normal on the outside for all of us.
Why the charade? Because there is something on the inside . . . that keeps life from being far from normal for all of us. It is an auto-immune disorder called PANS (Pediatric Auto-immune Neuropsychiatric Syndrome). It is a medical illness that produces psychiatric, behavioral and neurological symptoms. It is poorly understood, grossly under-reported and is treated by only a handful of knowledgeable physicians in the United States. I am not going into detail here about what PANS is. If you have found this article, you likely already know enough that I need not explain its biology to you.
I will, however, describe what the familial experience of having a PANS child has been like for us. Having PANS is like having a psycho-social kidney stone, one that moves through the whole family system. That’s right, a kidney stone, because in the same way that a microscopic calcified burr-like bit of biology can tear up the soft innards of a kidney, PANS has that same roto-rooter kind of effect on a family. Sometimes, PANS shreds families into bits and pieces.
Unfortunately, the effect it has on our Anychild’s brain and nervous system is even worse. One infection and one immune response gone awry and the aftermath can take months, if not years, to heal. The damage that is done doesn’t show on the outside, but again—just like the aftermath of a kidney stone—the pain and destruction it causes on the inside is immeasurable.
Since we are in the ‘anything goes’ world of metaphors, let’s move right along from kidney stones to large aquatic reptiles. Yep, reptiles.
PANS is about as damn reptilian as you can get. With its cold eyes and bulletproof skin, it malevolently sits under the surface of Anychild’s life, like a crocodile in a still pond. It can be very quiet for long periods. And during these quiet stretches, that water looks so very placid that if we say that Anychild has a serious illness, people look at us as if we just sprouted an extra head—and trust me, two heads is not a good look for anyone.
Opening up our lives to people on the outside is scary, because this illness (one that often shows its teeth only within the confines of our home) is a mercurial beast, to say the least. And as we have learned, people on the outside of our lives, who understand little, but judge generously, can be very, very cruel.
Living with a crocodile in the house is a fairly accurate depiction of what life with PANS is like.
To be clear, Anychild is NOT the crocodile: PANS is. PANS lurks under the surface at all times. And it is something that we want both to hide from the world and to warn the world about. That fact right there: hiding the truth vs. screaming it from the rooftops is the slippery slope every PANS family walks every single day.
Keeping the crocodile hidden always seems like a good idea, but when we have done a really good job of keeping the beast hidden and Anychild gets acutely ill and we have to bring him to an unfamiliar doctor’s office or an ER, all hell can break loose, very quickly.
Why? Well, because the first thing a medical staff wants to look at are the symptoms, and PANS symptoms are never pretty. When your Anychild is twitching, hallucinating, paranoid, ticking, delusional and violent, let me tell you, Modern Medicine, armed with Big Pharma, is quick to step up with a slew of ways to quiet that Anychild down.
So, while Modern Medicine quickly becomes focused on ‘symptom control’, an Anyfamily’s focus turns to:
Trying desperately to explain that this is not their Anychild’s normal
Trying desperately to explain that their Anychild is NOT mentally ill.
Trying desperately to explain that their Anychild has an auto-immune disorder that is a medical illness that produces psychiatric/behavioral and neurological symptoms.
Trying desperately to explain that their Anychild was a different child yesterday—that this is an acute onset of symptoms and they are due to an underlying infection, an infection that may not be readily apparent.
The level of tolerance for an Anyfamily’s explanation varies widely, from sympathetic amusement, to pity, to blatant disregard for everything that is said. An Anystory seldom ‘passes the smell test’ among disinterested, rushed and exhausted medical personnel. So, after they’ve listened and deemed the Anyparents to have no credibility, the Anydocs usually move to the first line of defense for the symptoms an Anychild is displaying. This is usually where the Anydocs will begin to steer the conversation toward the world of neuroleptic medications.
Neuroleptics are used to treat psychiatric symptoms. Neuroleptics produce an almost immediate state of apathy, which to the medical community, is highly preferable to the erratic, difficult and hard to manage behaviors that are part and parcel of a good old-fashioned PANS flare.
In and of themselves, neuroleptic medications are pretty scary, but Anyparents know that when they are placed into the body of a PANS child, the results can be particularly bad. How do Anyparents know this? Well, most of them have done their homework and have researched the topic of what happens when PANS children are misdiagnosed and treated with the wrong medications. Their searches invariably lead them to a plethora of evidence, both research based and anecdotal that describe cases of Anychildren who have decompensated markedly (sometimes irreversibly), after a (sometimes single) course of treatment with neuroleptics. Anyparents will be stunned at the research, but they will be brought to their knees by the stories. They will hear plenty of them first hand from other parents that they interact with via the wonders of the virtual forums Anyparents haunt with startling regularity. It is in these secret virtual hallways, where Anyfamilies bare their souls, that Anyparents meet the parents whose Anychildren have suffered the very consequences we read about in the journals- and hope to hell are not real. This is when we all realize these children, these Anychildren that are suffering, they belong to all of us.
Unfortunately, for Anyfamilies in crisis who are under the gun of a fast-moving medical system that wants to begin a neuroleptic based treatment plan, there is usually little that family can do in the moment to impart the wisdom they have gained onto an Anydoc. When a PANS crisis happens within the confines of a non-PANS literate medical facility, all of that wisdom the Anyparent has acquired to help their child- holds up about as well as a Kleenex in water.
The scenario I have described is awful, but it is just one of the many terrible realities that occur once you fall down the rabbit hole of PANS. It is hard to articulate how scary life becomes when you have a flaring child that you cannot hide from the world, with an invisible illness that most doctors cannot (or will not) see, and you have to bring them to a medical system whose treatment of choice can lead to devastating and permanent side effects.
Anyparents live with fears that other parents cannot even imagine. To the unbaptized, it may seem absurd that a parent declining to have their child treated with a medication that will harm them could result in a charge of medical child abuse… but it happens all of the time… and Anyparents know this. This is why we learn to get quiet and elusive . . . Not because we are lying! Not because we have something to hide, or are fabricating an illness that our child does not have! We become quiet and elusive because that is what it takes to move through the Shadowlands that a Shadow Syndrome like PANS creates.
Can you see how truth sometimes really is stranger than fiction? After all, it is true that my Anychild who runs like a gazelle— also suffers from a serious medical condition. Who would ever believe that he runs like a Gazelle not because he wants to, but instead because there is a crocodile the world cannot see, shadowing right behind him?
Thanks to Anymom for the special message and the story! If you’re wondering, here’s my Amazon review of the book:
Shadow Syndromes is a compelling story about a family’s heart wrenching plight with PANS. The author, “Anymom”, tells her story very well and provides some helpful resources. Nobody expects to be part of a medical mystery trying to figure out what is happening to your own child when even the doctors don’t know. The book makes it very clear that this could happen to Anymom, Anychild, Anyfamily in Anytown. With Shadow Syndromes, parents (or anyone!) can learn about PANS and some other medical conditions and know that they are not alone. At the affordable cost, you can buy one for yourself and buy books to give to doctors, teachers, friends and/or family members….everyone!
Shadow Syndromes is a nice addition to the ever-growing library of PANDAS/PANS books, videos, and articles. The book would make a nice gift if you want somebody to understand more about what your PANDAS/PANS family is experiencing. Notice that you will be able to submit your story to the Shadow Syndrome’s web site for Anymom’s blog. That will be a nice outlet for the Community.
As I always do, I asked Anymom to complete the sentence “PANDAS Sucks Because…”. Here’s what she said. “PANDAS Sucks Because…even on the sweetest, sunniest, best day– there is always a shadow of fear that looms… because we never really know for sure, that the beast that is PANS will not rear its ugly head and make our whole world grow dark all over again.” Sigh. That’s very true. Yes.
I hope everyone out there is doing well this winter. Everybody in my little household has been sick, except me (knock on a forest!). So, keep doing your best to keep yourself and your family as healthy as you can. It seems like everywhere you go somebody is coughing all over everything. Ugh. Hey World, if you are sick…STAY HOME!
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Sarah Jane Alleman is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. She is the past Director of Kentucky PANDAS/PANS Support, and Sarah was a Parent Contributor to the book “PANDAS and PANS in School Settings.” Find PANDAS Sucks on Facebook, Instagram, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.
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