Improving chronic pancreatitis care for kids
Communicating with children can be challenging, especially when they aren’t feeling well. Children sometimes exaggerate or downplay symptoms or are unable to describe their symptoms. This challenge, together with a general lack of knowledge about the prevalence of chronic pancreatitis, is why pediatricians who examine children with extreme, recurrent abdominal pain usually do not suspect chronic pancreatitis. Patients and families endure excessive testing, and clinicians, who often do not understand the disease, do not partner with parents to communicate openly or establish effective care plans. As a result, cases of this extremely painful and sometimes deadly disease aren’t often reported in children. No one knows how many children around the world are suffering needlessly, as happened in Coryn’s case.
I clearly recall my daughter Coryn's expression and the desperate feeling I had when I saw her lying in the arms of her preschool teacher, her ever-present blanket scrunched up in her little fists, the hollow look of pain in her big brown eyes.
I scooped her up and raced home, wondering why she was in such excruciating pain. The pediatrician suspected gastritis. After a few days, the pain resolved and she returned to her happy self. My husband Todd and I also thought it was just a tummy ache, like most kids experience, until these episodes started happening with some frequency.
In first grade, again I was called to pick up Coryn from school. I found her curled up in a ball on the classroom floor, a scene that was now becoming familiar. Once more, I rushed her to the pediatrician’s office and was given some antacid samples.
By the end of second grade, her tummy was hurting nearly every day.
We watched what she ate. Considered that stress in school was perhaps an issue. We made sure she got enough sleep at night. We were perplexed because she always seemed to get better and the tummy pain would resolve. So, were we just overly anxious parents?
Above all things, Coryn dearly wants to be a ballerina and enthusiastically attends her dance classes. When I suddenly had to coax her into going to ballet class, I became alarmed. I peered into the dance room window and watched as she stood at the ballet bar with silent tears running down her cheeks. She was in pain again. I was aghast.
“What is going on?” I wondered anxiously. It was only a short while later on our summer vacation that we would get an answer. Coryn came into our room early one morning with unbearable pain. The pain was so intense this time that she couldn’t stand up straight. We raced with her to the ER where tests showed her amylase and lipase levels were off the charts. We were given the diagnosis of acute and chronic pancreatitis.
Coryn spent the rest of our trip in ICU, on narcotic pain meds, undergoing testing, a tube down her nose into her stomach, and restricted from eating.
Once home, Coryn endured several MRCPs, an ERCP, genetic testing and more was prescribed. By December, she was still experiencing daily pain. She missed so much school that we got a letter from her school district. She couldn’t go to her beloved dance classes on most days. No one seemed able to tell us how to ease her pain.
We grew incredibly frustrated by the lack of timely response from the doctor, from the lack of treatment options, or even a plan for her care. I felt completely helpless, miserable, depressed and angry.
It was at this point of desperation that I found Dr. Steve Freedman, a researcher and gastrointestinal physician with a specialty in the pancreas at Boston’s Beth Israel Deaconess Medical Center. The moment
I spoke to him I knew I had found the right person and for the first time, I had hope that we could get Coryn better.
Dr. Freedman and his team were piloting a new program called TRUST (Together – Responsible – Understanding – Satisfaction – Thorough), the goal of which is to enhance the doctor-patient relationship and make patients and their families informed partners in their care. Using the TRUST program, Dr. Freedman helped put together a thoughtful plan for Coryn’s treatment – both in the short term and long term. This plan finally has Coryn on track to being pain free.
We hope that through Coryn’s Crusade for Kids in Pain we can help other children and their families find resources and relief through the TRUST program and also raise funding for research and new treatments for pediatric chronic pancreatitis. Please help us continue our mission and provide kids in pain comfort and hope for a pain-free future.
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