Hope was born prematurely and suffered two cardiac arrests as a baby and spent prolonged time on life support. Throughout her life, she’s faced numerous health challenges and been diagnosed with several different conditions, including hyperkinetic cerebral palsy. Because of Hope’s medical complexities, she struggled with chronic pain in her neck, back, abdomen and legs – pain that was sometimes so debilitating she couldn’t even get out of bed. She also suffered from migraines – up to three a week. It had come to a point where she was only able to go to school half the time due to pain, says mom, Lisa. The sense of helplessness weighed on her – Hope was frustrated and discouraged. Lisa recalls her bursting into tears one day, as she was “tired of being broken.”
Hope was referred to the Intensive Pain and Rehabilitation Program (IPRP) at the Alberta Children’s Hospital. IPRP is a three-week comprehensive program to help families understand that while pain sometimes cannot be healed, it can be managed so kids and teens like Hope can still have a great quality of life. The program involves physio and occupational therapy as well as family and individual therapy. At first, Hope didn’t want to go. She was convinced it wouldn’t change anything and she didn’t want to miss even more school than she was already missing. But she got up and went every day anyway and soon, she began to learn a lot about herself and her pain. The IPRP team made her feel understood and validated. They explained that what she was feeling was real and that it was hard. She appreciated being surrounded by people who just “got it” and wanted to help. The team developed a plan for Hope to pace her days, since she was so used to pushing herself that she had been overdoing things and becoming exhausted, allowing the pain to be in control. She really appreciated how specialists worked together on a customized strategy for her. “It isn’t a one-size-fits-all approach,” she says.
Since finishing IPRP in November, Hope has made great strides. She has a toolkit to help her control her pain and is following the plan her team developed. Lisa has noticed a change, too. Hope is taking charge of her own health and isn’t reliant on her parents for things like reminders to take her meds. She is more positive, confident and independent now. “It’s amazing what you can do in just three weeks,” says Hope. Adds Lisa, “I wish every child with chronic pain had access to this program.”
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