Follow along as Anchel Krishna shares her experiences as mother to Syona, an extraordinary toddler with cerebral palsy.
But Syona’s cerebral palsy adds another element to our concern with regards to pain. And, according to a recent study from Holland Bloorview Kids Rehabilitation Hospital, my worries are legitimate. Twenty-five percent of kids with cerebral palsy under the care of physicians are in moderate to severe chronic pain. Pain that can limit activity.
Before the study came out we suspected that Syona was in pain. She would often wake up at night, screaming and crying. Often, she would only calm down after a few hours of cuddles, massages and gentle pressure applied to her legs. Once we reported this to her doctor she was put on a low dosage of medication to relax her muscles. Overnight there was a difference. Although Syona still didn’t sleep through the night, the screaming certainly decreased.
More recently, Syona’s has started complaining and crying so I asked her if something hurt. She would say "knees," but we didn’t quite know why. A couple of weeks ago, Syona’s physiotherapist felt her kneecaps. She explained that the tightness of Syona’s leg muscles was pulling her kneecaps up out of place. This is a pretty painful condition and extremely common in kids like Syona. Although there’s no permanent solution, we are working to stretch them back down and use other tools to put them into place. Now when Syona complains of knee pain we have a way to temporarily relieve the discomfort. We’re also anxiously awaiting a couple of procedures that will help treat Syona’s spasticity (at least temporarily). This was also the reminder that I need to always listen to what my kiddo is saying, and take it seriously.
I don’t lie awake thinking about whether Syona will walk, how we’ll pay for the next piece of equipment, whether she has a cognitive delay or any of the other "big" questions that are simply part of our current existence. But thinking of my perfectly imperfect, spirited, stubborn, brave, strong girl in pain — well, that’s enough to keep me up at night with tears in my eyes. The pain that comes from regular kid things like teething, bruises and illness sucks, but the thought of the extra pain that comes from her tight muscles hurts my heart a little bit more than everything else.
I’m hopeful that this recent study will push all of us involved in a child’s care (parents, doctors, therapists, etc.) to take a moment to listen — really listen — to what our kids are telling us.
What do you think? Do you have any secret tips and tricks to help treat pain in your children?
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