The Burning Truth

“This book is the powerful account of the heroic struggle of one teen and his family against an unbearably painful and misunderstood illness. This book chronicles this brave young man’s excruciating pain syndrome that developed following a tumble during horseplay with his brother, followed by a tireless search across the USA for help that lead to misunderstandings, dead ends, painful and frightening treatments, and, after extraordinary courage, to healing and recovery. This book is both an inspiring true story as well as an illuminating addition to the care of children and adolescents suffering from this poorly understood severe pain syndrome. I strongly recommend this book to both lay readers and professionals caring for children with chronic pain.”
--Kersti Bruining, M.D
Fellow of the American Academy of Neurology, Clinical Assistant Professor Department of Neurology and Ophthalmology, Michigan State University, Editorial Board of: Continuum: Lifelong Learning in Neurology®

“Wendy Weckstein’s account of her son’s illness is a heart-piercing story of suffering, honesty, courage, and determination. It is hard to think of another book populated by so many heroic people. Her story is not simply about a rare pain disorder. It should be read by every parent of any chronically ill child. But her story is larger than that. It’s about the suffering that touches nearly every family in one form or another, and in that light, it should be read by us all.”
--Henry David Abraham, M.D.
Clinical professor in Psychiatry at Tufts University School of Medicine in Boston, Massachusetts, Co-recipient of the 1985 Nobel Peace Prize for his work with the International Physicians for the Prevention of Nuclear War, Author of “What’s a Parent to Do? Straight Talk on Drugs and Alcohol,” New Horizon Press.

Prologue
A Story Worth Telling

A mother’s worst nightmare is watching her child suffer. Any mom can attest to the fact that she feels a strong instinctive drive to protect her child. When she can’t, it hurts deep in her soul, penetrating well beyond what she ever thought possible; it is much worse than if she were going through the painful experience herself.

A severe injury or trauma to a child can lead to great despair, but when that child experiences unrelenting, debilitating, and agonizing pain day after day, it can literally rip you apart inside. As I discovered, a mother will do virtually anything to make the pain go away.

This is the true story of my son Devin who, at the age of 13 after a minor injury, developed a devastating neurological disorder known as Complex Regional Pain Syndrome (CRPS) and how he lived with constant unbearable pain for three years.

This is the story of our family’s frustrating journey trying to make our son’s pain go away and searching for the elusive cure, and it is the inspirational story of a boy who was dragged to hell but somehow summoned up the courage, strength, and determination to find his way back without losing himself along the way.

This is also the story of the many difficult and disturbing truths I was forced to confront as Devin’s devastating condition slowly took over our lives. The most profound and recurrent awakening centered around vast flaws within our modern-day medical system, especially when it comes to the diagnosis and treatment of pain.

To my surprise, I learned that even the most reputable of physicians, instead of trusting their patients, are prone to labeling inconclusive and hard-to-diagnose pain as psychosomatic. This maddening reality, along with the rarity of CRPS, caused us to flounder for many months.

At times, my personal anguish was nearly overwhelming and I often felt paralyzed as I watched my son’s condition deteriorate. Needing to find the answer and having no other alternative, I channeled my distress into sheer determination as I accompanied Devin through what seemed to be never-ending airport corridors around the country in search of a doctor who would not only understand what was wrong with him but would also believe in him.

Ultimately, this book chronicles the life lessons I was forced to learn as I dealt with my on-going private feelings of despair and helplessness even while I remained determinedly optimistic in front of Devin...

Chapter 1

An Innocent-Looking Tumble, and the Nightmare Begins

August 30, 2009

Devin and I are finally on our way to the Children’s Hospital of Philadelphia. Staring out the airplane window at the beautiful sky, I wonder… am I about to wake up from this nightmare? Is my fifteen year old son about to have his life back?

I think back at how truly horrific this has been for Devin - for our whole family - all because of a minor injury 2 years ago, that really should have been No Big Deal . . .

September 15, 2007, was the night of the big soccer game between the northern Michigan small-town rivals Central High School and West Senior High School. Devin, who had just begun the eighth grade, had been invited to attend the game with his big brother Ethan, a junior at Central. What began as a kind act of brotherly love turned into the catalyst that changed Devin’s life, all our lives, in ways we never could have imagined.

Ethan was Central High School’s biggest fan. Inevitably dressed in black and gold face paint and matching wacky clothes, Ethan was that noisy, noticeable student in the fan section leading the other students in loud chants and cheers. His lack of inhibition and enthusiasm probably made him one of the best super fans the school has ever seen!

I often heard from friends who regularly attended these high school sporting events that they were more entertained by my son’s high energy theatrics up in the bleachers than by the gripping game being played on the field below. . .