Medical mysteries abound, and sometimes the struggle isn’t just against a disease. Patients find themselves having to “fight” the medical community for answers and proper treatment. I know this kind of challenge firsthand as I’ve spent many years trying to find “answers” to my inexplicable digestive ailments, and now my sister is having to navigate this same kind of crazy medical maze for my nephew who is suffering from long-haul COVID. When the patient is a child, the parent’s role becomes crucial. Who else is going to advocate with more fierce determination and passion?

What’s Wrong with My Child? One Mother’s Desperate Quest to Uncover What Was Really Wrong With Her Family … and the Disturbing Facts She Revealed That Could Help Save Yours (Morgan James Publishing) by Elizabeth Harris takes us on this long, winding, emotional and terrifying journey, one she and her family faced with her son Cody. 

Christmastime 2010. While the Harris family’s story doesn’t start here, it is then that the first signs appeared that something very strange was happening to Cody. He had had strep throat and was on antibiotics. He had very little appetite or energy. None of this was new, unfortunately. He had many such illnesses throughout his childhood. But this time was different.

A DESPERATE SEARCH FOR ANSWERS

He seemed to become obsessed with buttoning and unbuttoning his shirt and with pacing back and forth in a specific pattern between two rooms of their home. He burrowed into a blanket fort in the living room and refused to go visit his dad’s house, an event he usually was excited about. Soon, Liz found him in a corner freaking out about “spiders” crawling all over him. There weren’t any there. After a series of phone calls with the pediatrician’s office, Liz brought him to the emergency room. 

Cody seemed to be suffering from PANDAS (pediatric acute-onset neuropsychiatric disorders associated with Streptococcus — quite a mouthful), which is one of those diagnoses known and validated by only a few in the medical community. Most doctors didn’t know about it or believe it really existed. This is despite the statistic quoted in the book that “one in every 200 children in the U.S. will develop symptoms of PANDAS.” That’s a scary stat! 

What’s scarier is that Cody’s symptoms, which on the surface seemed mainly psychological, didn’t end there. They increased in severity and became more and more disparate and troubling over time. Liz got little help from the medical establishment; she even got “fired” by her son’s pediatrician at one point! While the story is told in the third person, there are quotes by the author throughout the book. One that really affected me occurred when she says to yet another doctor, “I sure hope you can help my child.” How sad to realize her hope and trust comes at a moment that’s still so early in her journey. 

Eventually, Liz realized that doctors weren’t going to give her the answers she sought; she would have to become her own medical detective. This was not a short-term odyssey. It was one that lasted for many, many years and took great courage, strength and tenacity on Liz’s part. “I was alone, afraid and fighting for our lives … but quitting was not an option.” That phrase “fighting for our lives” is not an exaggeration; it would take everything she had to keep her son out of psychiatric wards and even juvenile detention centers. Yes, his behavior had become that out of control. 

STRANGE ILLNESS SILVER LININGS: A SUPPORT SYSTEM OF STRANGERS

As I was reading the book, I often wondered about the medical costs Liz and her family faced and how much was covered by their health insurance. Liz was a single mother. This kind of medical issue can put families into debt and even ruin them financially. That is another troubling factor in this kind of sad situation. And “the trouble with Cody” isn’t the only issue Liz found herself grappling with. As she goes down the medical rabbit hole, she discovered that many of her family’s other health issues seemed to be connected to the same cause.

As the years of struggle that Liz and her family went through continually snowball, you wonder how anyone could possibly cope. But she did more than just “cope” — she was determined to uncover what this strange illness was that was making her whole family sick.

I’ll let you read the book to see what happens, but as Liz says, “one of the things I’ve learned from this saga is that many psychiatric disorders are simply undiagnosed medical disorders. Imagine how much better folks would feel if only they got the right medical treatment.” 

Not only has Liz done much of the legwork for others facing similar issues, but after experiencing firsthand the lack of targeted care for an entire spectrum of autoimmune and neuropsychiatric disorders (of which PANDAS is merely one), she created a wellness consultancy and treatment center to help afflicted patients and their families. You can check out Liz’s website for help and support if you are struggling with your own complex and confusing medical disorder.

Buy this book!

Elizabeth Harris waged a hard-fought battle against both the medical system and the juvenile courts of Williamson County to get to the root of PANS/PANDAS, a strange disease that hijacked her first-born son’s life. Using her science education background and her experience as a successful entrepreneur, Elizabeth exposes the mysterious bacteria that is not only behind her son’s disease but is also a key contributor to a myriad of maladies in America.