Tracy Jensen often thinks about her son, Ethan. He was someone with an amazing aptitude for learning. “He was a boy who had eyes to notice others who, like him, were in pain and suffered silently, Tracy said. “He was a boy who had the heart to care.”

Ethan never stopped caring about life. It was just the pain became too frequent and too painful for him. Ethan suffered from muscle pain in his back and right leg. At 5 months old he had a fatty tumor removed from his spine. His spinal cord was unable to be untethered and the scar tissue that remained was also troublesome.

Tracy and her husband, Eric, wonder when their son’s suffering began. Was it before his birth? Was it at 5 months old when he had the surgery? Was it later as scar tissue tangled the cord?

As they became aware of their son’s pain, they tried to help but they weren’t sure how, other than with over-the-counter medications, massage therapies and hugs.

Ethan didn’t really know how to help his pain and neither did most adults in his life. When he asked for medication or begged to lie down or go home, his requests were typically met with scoldings for him at school. Most didn’t understand how such a usually active child could truly be suffering.

Over time, Ethan learned to mask his pain.

“A child in chronic pain who is continually misunderstood is going to have emotional struggles such as depression,” Tracy said. “It is not reasonable to expect a child to know how to understand these issues, and my son was no exception. He struggled to process the facts of his life and this caused him to be more and more frustrated.”

Before he entered middle school, Tracy found a book on healing a child’s chronic pain. She continued to research and found that Cook Children’s offered a pain management program. It was there that the family met Artee Gandhi, M.D., medical director of pain management.

“Dr. Gandhi and company were incredibly responsive and devoted to Ethan's needs,” Eric said. “He was enamored with her in particular because she took his interests seriously and treated him as a young man rather than a child. However, Ethan was not always honest with her about the severity of pain he was experiencing. He sometimes believed that the doctors would not believe him or that they would think he was exaggerating his pain level to get medications.”

All through high school and beyond, Ethan studied science online. He taught himself subjects such as organic chemistry, DNA and gene therapy, and pharmacology. He learned how drugs, and different doses, acted and interacted in the body. He thought he understood enough to be safe with whatever he used for pain. He thought he was in control of his pain as he learned to manage it himself. He bought over-the-counter meds and used them off-label. He found ways to obtain prescription pain medication without a prescription.

The pain management team knew Ethan's level of self- education made him a challenge. Dr. Gandhi warned him about self-medicating and the dangers. Unfortunately, like many in their late teens, Ethan believed he was indestructible.

Ethan never stopped coming to clinic, but as time progressed he began to cancel and reschedule appointments more frequently. His parents believe that by mid-2015, Ethan thought surgery was his only chance for relief. The surgeons were able to straighten a significant portion of his lower spine regarding the pain, and as he was tapered off of his pain medication he began to once again self-medicate.

Eventually, drugs, especially opioids, were the only things that made him feel better. It was only slightly better, but that was OK for him, at least for a while. After the realization that his surgery failed to entirely alleviate his pain, Ethan became increasingly afraid of how his pain would continue to impact his life. He was afraid of what others would say, or what they thought of him. He believed no one would understand. He ultimately decided that he would have to treat his pain himself.

According to the Medical Examiner, Ethan died of mixed drug toxicity.

“We are only now looking back and asking ourselves if we could've done much better,” Eric said. “That day, my son was freed from his pain, but our pain would just be beginning.”

About the source

Artee Gandhi, M.D., is a pediatric pain management specialist and anesthesiologist. She has trained across the country including residency at the University of Missouri and fellowship at Stanford Univeristy. Cook Children's Pain Management program cares for infants, children and adolescents with chronic and acute pain. C​ook Children's is one of a few children's hospitals in the U.S. providing a comprehensive pediatric pain management program.

About Pain Management

The Cook Children's Pain Management program uses a team approach in caring for infants, children and adolescents with chronic and acute pain. Cook Children's is one of a few children's hospitals in the United States providing a pediatric pain management program. 

Our team includes a board certified anesthesiologist trained in pain management, a licensed clinical social worker specializing in psychophysiology, a dedicated physical therapist and pain management nurse coordinator.

Because of our team approach, patients will see their physician, physical therapist and psychophysiologist in one visit. 

Patients can make an appointment and physicians may refer a patient by calling our offices at: 682-885-PAIN (7246). New patients, for your convenience, please have your insurance information ready when you call.

If you want proof, read this diverse list of our most popular stories of 2016. We hope you enjoy our look back:

10. 7 Ear Infection Myths Every Parent Should Know. Parents flocked to this blog from Doc Smitty. Can your child go swimming with an ear infection? Do all ear infections need antibiotics? If your child gets ear tubes, will the infections stop?  All this and more was answered in this blog.

9. 7 Online Challenges This ER Doctor Warns Could Be Deadly Oh the Internet. Where kids do all kinds of things to get noticed and maybe go to hospital in the process. We asked our medical director of the Emergency Department to look at seven really silly, really dangerous dares that kids (or grownups for that matter) shouldn't try at home. 

8. Almond Milk: A Nutty Fad or Healthy Alternative. Almond milk sales have gone through the roof over the past decade. But is it the right drink for your child? Doc Smitty gave the answer in this informative piece. 

7. The Death of Ethan: A Life of Chronic Pain Ends in Tragedy. This is the most recent entrant in our list of top 10 stories. Only the fact that it was published in December kept this story out of the top five. We were so honored that Ethan's parents shared their son's story of a life filled with chronic pain. They want you to read it to learn about their son and hopefully help other children who may be suffering as well.

6. New Hope In Fight Against Deadly Brain-Eating Amoeba. The Lewis family holds a special place in the hearts of everyone involed in the Checkup Newsroom. Following the tragic death of their son Kyle to a brain infection caused by a water-born amoeba, Jeremy and Julie Lewis created Kyle Cares. Read their inspiring story as they fought to bring a drug to Cook Children's and other hospitals around the nation that may save children's lives.

5. 11 Tips That Could Save Your Daughter's Life.  In Janaury 2016, Rylie Whitten made national headlines after suffering one of the worst cases of toxic shock syndrome (TSS)  that her doctors had ever seen. Rylie's story moved us to run this informative piece on TSS that we hope every parent of a daughter reads.

4. A Sign From Heaven: Family Travels Across U.S. For Care at Cook Children's. A family's desperate search for answers on Google led them to Cook Children's. Read the fascinating story of what led this family to travel from Detroit, Mich. to Fort Worth, Texas, to be treated for a rare condition called hyperinsulinism.

3. The Most Common Rash You Never Knew About. Ever heard of molluscum contagiosum? We hadn't when Dr. Diane Arnaout wrote this blog for the newsroom. Dr. Diane's informative blog "that will save you and your child pain, money, time and anxiety" went viral quickly and became our third most read story of the year.

2. RSV On The Rise: 6 Things Every Parent Should Know. Here we are at the beginning of 2017 and we have been lucky in that we haven't seen much flu yet at Cook Children's. But we have seen plenty of RSV (respiratory syncytial virus), which explains the popularity of this great blog from Dr. Lizy Varughese.

1. Let's Learn Something: Bouncers, Jumpers and Walkers. Dr. Diane Arnaout's "Let's Learn Something" series was a big hit this year and none were bigger than this tale of caution. Dr. Diane's blog on how baby bumpers, bouncers and activity centers could play a role in your baby's motor delays is our most read new story of 2017. You've probably read this blog. But if you aren't one of the more than 117,000 readers who took a look, now's the time. And if you have read it, feel free to click again.

Well, that's it for 2016. Thank you all for reading. We'll be back with plenty more stories to tell in 2017.