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"One of the biggest things I gained from this experience was the chance to finally meet other girls who are going through something similar.... We really got to know each other and learn about what’s happening with each of us. It was wonderful because each of us had sort of felt ... alone."
13-year-old Jewel
Kansas City,
09
January
2017

Comfort Ability: When answers are elusive

New one-day program helps kids with chronic pain

The following article was written by Julie DeVoe, Children’s Mercy Director of Philanthropic Communications, and her 13-year-old daughter, Jewel, who recently participated in the launch of the Comfort Ability pain management workshop at Children’s Mercy.

Julie's story:

As a Children’s Mercy employee in the Communications and Marketing Department, I often learn about new hospital programs and services early. Never has that meant as much as it did when I heard about a new day-long workshop we were set to launch in November — Comfort Ability. I was among the first to register my family to participate. You see, our 13-year-old daughter, Jewel, has had chronic pain for more than a year following a trampoline injury, even though the physical injury is no longer detectable. Our family has been desperate for answers. 

A group workshop for children with pain and their families, Comfort Ability was created by Dr. Rachael Coakley at Boston Children’s Hospital six years ago and has now launched in nine other leading children’s hospitals in the U.S. and Europe. Dustin Wallace, PhD, a Children’s Mercy Clinical Psychologist in Developmental and Behavioral Sciences, spent months working alongside Dr. Coakley to bring the program to Kansas City for our patients and families. Dr. Wallace led the kickoff session at Children’s Mercy Hospital Kansas in early November, and Dr. Coakley attended as well. Five families participated. 

Within the first five minutes of the session, one of the most powerful experiences happened after workshop leaders had taken the kids to another room. Dr. Wallace asked the parents to close their eyes and imagine for a moment “What would life be like if your child didn’t have pain?” Every parent in the room became emotional. It breaks my heart how Jewel’s pain has robbed her of performing in community theater productions, singing in a children’s choir, going on family walks and bike rides, playing with neighborhood friends, competing in youth triathlons and so many other activities. Dr. Wallace gave my husband and me a moment to see our girl doing those things again…and then throughout the workshop he gave us tools to help make that image a reality.

Chronic pain in adolescents involves central sensitization of the nervous system; instead of getting used to pain sensations, the body becomes hypersensitive to them. It's not easy to explain because it has to do with the brain, biological systems/functions and emotions, and how they all affect each other.

Chronic pain in kids is so confusing that even scientists who truly understand it use metaphors to explain it. When the original trigger for the pain has ceased, but pain signals continue to be transmitted, it’s like a broken alarm clock, said Dr. Coakley. “Imagine that your morning alarm clock goes off at 7 a.m., and you roll over to hit the snooze button, but it doesn’t turn off like it’s supposed to. You try banging the snooze bar, switching the alarm off, unplugging the clock, taking out the batteries, and even throwing it out the window, but it still keeps ringing. You’re clearly awake at this point, so the ringing alarm clock is not doing any good anymore, but it just won’t turn off.” 

Chronic pain in adolescents is far more common than most people know. 1 in 5 kids will experience an episode of chronic pain lasting three months or more. Getting it under control is not an easy, quick-fix kind of thing for many kids. Jewel's chronic pain was quite similar to what the other participating kids (all girls, 12-15) have been dealing with. Many of the participating girls have been or will soon be evaluated for the Children’s Mercy Rehabilitation for Amplified Pain Syndrome program (RAPS). Dr. Wallace explained that the Comfort Ability program is a valuable companion to RAPS because it helps parents understand how better to engage in their child’s recovery. 

As I considered how best to communicate with my colleagues about the program and who it helps, it occurred to me that hearing from Jewel may be the most meaningful. So, I asked her to tell her story…what she’s going through and the benefits of the clinic.

Jewel’s story:

After 14 months of pain and not being able to do the things I love, I began to wonder if anything would help. More than a year ago, I hyperextended my knee on our trampoline. That event was the beginning of something I never knew was possible. Every day when I wake up, my pain is there to greet me. During the day it stays right with me, like a bully. It’s also the last thing I feel right before bed.

Before I heard of the Comfort Ability program, I thought for sure there was nothing to be done. The idea of that made me depressed and anxious. I had worked with two amazing physical therapists at Children’s Mercy, had X-rays and an MRI, and even had a blood draw to rule out scary things like leukemia and thyroid disorder. I believed my pain would continue for a very long time, if not for the rest of my life.

When my mom told me about the Comfort Ability program, though, hope flickered inside of me. Then the worry returned, and I wondered, ‘What if the clinic had nothing to offer for me? What would happen next?’ Would it only make me more upset, or would it assuage the melancholy attitude and pain that affects every day of my life?

Going into the clinic was a bit nerve racking because I had no idea what to expect, but I quickly realized I had nothing to worry about. As soon as I walked in with my parents, kind ladies and gentlemen running the program greeted us. That day was so cleansing, so relaxing, more so than any day I have had in a long while. We learned many techniques that we can work on at home including diaphragmatic breathing, aromatherapy, mindfulness, guided imagery, biofeedback and art therapy.

One of the biggest things I gained from this experience was the chance to finally meet other girls who are going through something similar. I’m generally not a very social person, but all five of us just clicked. We really got to know each other and learn about what’s happening with each of us. It was wonderful because each of us had sort of felt ... alone.

The main thing we focused on in the Comfort Ability program was setting goals to get back on track. Since that Saturday at Children’s Mercy, my parents and I have been working on my walking and stretching goals, not to mention the quick and easy distractions, like deep breathing, that I can do whenever I am stressed. Those distractions and goals are so important because one thing I learned was that my pain is partly caused by stress. I have to lower it to be me once again!

Overall, the pain management clinic was a relaxing, informative and helpful program that was definitely worth it. It was a wonderful experience that I’m sure will help guide my body to healing. I hope the same for the other girls.

Learn more about the Comfort Ability Program.

Register for Jan. 28 Comfort Ability at Children's Mercy Hospital Kansas

This supportive and interactive workshop is designed to help children with chronic or recurrent pain, and their caregivers, learn strategies to better manage pain and improve day-to-day function.

Kids will connect with peers who also have pain, learn mind-body strategies for managing pain and pain-related stress and develop an individual coping plan for improved pain management. 

Caregivers will learn parent-based strategies that promote child comfort, understand how to scaffold a plan to support improved function at home and school and obtain resources for additional pain management support. 

For ages 10 - 19. Cost is $90. Space is limited! Register online or call (816) 983-6750 option 3.