After a seemingly insignificant fall off of his brother's shoulders at a high school soccer game, thirteen-year-old Devin Weckstein was diagnosed with Complex Regional Pain Syndrome. The bright, musically talented, and energetic boy turned into a debilitated young man seemingly overnight. His parents sought every treatment possible, but no one could have imagined the challenges that lay ahead. The Burning Truth chronicles the incredible journey of mother and son as they not only deal with chronic pain, but also attempt to find a cure for Devin's illness. With a deeply honest voice, Weckstein relives their frustrations with physicians and the medical care system, the special education within the school system, the inconceivable misconceptions regarding pain in children, and the daunting world of medical marijuana. Two tireless years of diligent searching later, the Wecksteins learned about Dr. David Sherry from the Children's Hospital of Philadelphia. Despair turned to hope. During his five grueling weeks at the hospital, Devin underwent the aggressive treatment that would bring this courageous young man back to life. Told from a mother's perspective, The Burning Truth reveals the heartache, courage, and strength of the Weckstein family in their search to help Devin; it ultimately proves the power of family, love, and the human spirit.

The Burning Truth

The Inspirational True Story of One Mother's Search for the Answer to Her Teenage Son's Painful and Highly Misunderstood Neurological Disorder, Complex Regional Pain Syndrome (CRPS) By Wendy Weckstein

Abbott Press

Copyright © 2012 Wendy Weckstein
All right reserved.
ISBN: 978-1-4582-0219-2

Contents

Complex Regional Pain Syndrome (CRPS) – a Definition........................................xiiiPrologue A Story Worth Telling....................................................................1Chapter 1 An Innocent-Looking Tumble, and the Nightmare Begins....................................7Chapter 2 Two Steps Backward, One Step Forward Towards a Diagnosis................................18Chapter 3 High Hopes and a Big Mistake............................................................25Chapter 4 Back on Track and Looking for Answers...................................................39Chapter 5 Our Trip to the Wine Country............................................................49Chapter 6 The Emotional Roller Coaster Continues..................................................60Chapter 7 Desperate Times Call for Desperate Measures.............................................72Chapter 8 An Unexpected Bombshell.................................................................82Chapter 9 Medical Marijuana 101...................................................................96Chapter 10 A Stranger Moves In....................................................................106Chapter 11 Stumbling on the Answer................................................................117Chapter 12 From Tears to Triumph..................................................................131Chapter 13 One Year Later.........................................................................149Epilogue Looking Back at Lessons Learned; Looking Ahead with a Heartfelt Hope.....................163A Photo Collage – Devin's Journey...........................................................173Pediatric CRPS Family Resource Guide..............................................................187Acknowledgments...................................................................................195

Chapter One

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?

Devin is sleeping peacefully on my shoulder and I can't help hold back my tears; will he actually wake up in a few short weeks knowing what it's like to live again without pain? I smile as I think about this amazing vision but my insides are still tight with anxiety. Devin has been through so much; the worst kind of torture any teenager could imagine since he was just 13. I get so frustrated when I think that Dr. Sherry's program in Philadelphia had been there all along and we just couldn't find it. Two bright, medically educated parents, yet we somehow couldn't find the one program that may finally be the answer!

It sickens me to think about all that Devin's endured; 15 doctors, 14 medication trials, 12 surgical procedures, 4 horrible weeks in intensive care units where we had him receive risky treatments like ketamine infusions ... all because he was suffering and we didn't know what the hell to do! The amount of money wasted by us and our insurance company as he received one failed treatment after another was obscene.

I can't believe we were moments away from sending him to Germany to put him in a ketamine coma! Devin's pain was so unbearable - but a coma in another country - for the love of god, what were we thinking?

Who knew that medical marijuana would become his only reliable source of relief? What an outrageous experience that turned out to be. All I can say is, I'm glad those days are over!

What is totally amazing is that Devin is still on track with school. Thank goodness for some really great teachers, but I sure hope that I never come that close again to taking the school to hearing because of their insensitivity to special needs!

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.

Devin, being an easygoing low-key sort of guy, was in great awe of his big brother's larger-than-life personality. Both he and his little sister Taylor, with her freckled face and long red curly hair, found their confident, crazy, outgoing older brother hysterical and entertaining.

Devin had been hoping to see his brother in action at one of these games and was thrilled by the invitation. He was in the middle of a marathon piano practicing session after school when, at the last minute, Ethan asked if he wanted to go.

He dropped his piano books in an instant and ran into the kitchen, asking, "Mom, can I please go to the soccer game with Ethan tonight?"

I was preparing dinner and hesitated. It was a school night after all, but that was more of an excuse than anything. The fact was, sending him off with Ethan and his big sixteen-year-old friends and their new sixteen-year-old driver's licenses would take some getting used to.

But, the evenings were still warm and summer-like and the pressures of school had not yet begun. The game would be over before dark, I reasoned. Besides, it warmed my heart that Ethan wanted to spend time with his little brother and that he'd asked him to join him at the big game.

"Sure," I said with a smile on my face. "Have a good time."

"Ethan," I yelled into the other room, "be sure to bring Devin home right after the game. Don't forget you both have school tomorrow!"

"Okay, no problem," said Ethan, as he ran into the kitchen and gave me a big kiss on the cheek. "We've got to go. The game starts in a few minutes and my friends are waiting outside."

"Thanks, Mom. I'll see you later!" Devin ran after his brother out the door.

* * *

Later that evening at the jam-packed field, Devin innocently hopped onto Ethan's shoulders as they both began cheering for the home team. It was a close match with the score tied at 2-2, and the students were exceptionally rowdy. Unfortunately, at a high point in the game, when a goal was scored and the fans were going wild, Devin lost his balance and tumbled off his brother's shoulders onto the hard-packed soil, landing flat on his tailbone.

After several moments, a...