Ontario Brain Institute: What we don’t know about children’s pain can hurt them

Misunderstood, under-diagnosed, and under-treated pain in children is a serious problem in pediatrics. Donna Cappelli and her son, Julian, who has cerebral palsy, talk to TVO.org about how it's affected their lives
By Daniel Kitts - Published on April 22, 2019
Young man in wheelchair smiles as woman sits next to him, looking at him and smiling
Julian and Donna Cappelli will discuss their experiences with pain at an Ontario Brain Institute public talk on April 23. (Ontario Brain Institute)

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Many of us have struggled to describe the pain we’re feeling to a doctor or nurse — the struggle is even greater for young children still learning to speak and for children with disabilities that make communicating difficult. As a result, pain in children is often misunderstood and under-treated. 

Next Tuesday at 6:30 p.m., in Toronto, the Ontario Brain Institute will be hosting a public talk on the challenges that raises. Moderated by Globe and Mail health writer André Picard, the event will focus on misconceptions about children’s pain and the latest research in pain management. Click here to find out more about the event and how to attend. 

TVO.org talked to two of the featured speakers — Julian, 18, and his mother, Donna Cappelli — about the teen’s experience with cerebral palsy, how pain affects his life, and why they want the system to change. 

How does pain make your life more difficult? 

Julian: It delays my activities. 

Donna: We had a period of time where it was four months of really intense muscle spasms and pain. We didn’t leave the house on weekends. If Julian was to participate in an activity, we were always ready to leave early. And even while he was participating, we could tell he was in pain.

Why was it difficult for doctors to understand and treat the pain Julian was experiencing? 

Donna: Because Julian’s pain is associated with his cerebral palsy and muscle spasms, you kind of have to get the muscles relaxed to help stop the pain. So we dealt with Dr. [Darcy] Fehlings [of Holland Bloorview Kids Rehabilitation Hospital] because she would give Julian botox injections to help relax certain muscles. But she was limited in how much she could give him. His whole body would be tight, and he’d have to choose five parts of his body he wanted to treat that day. He still goes to school, and he needs to be cognitive. If he had to choose being in pain and still being able to participate a little bit, or not being in pain and not being able to participate at all, my guess would be he’d still want to participate. Is that a good guess, Julian?

Julian: Yeah. 

Was there ever a time when Julian was in pain and he wasn’t able to communicate that?

Donna: Certainly, the only form of communication he had at a young age was just screaming at the top of his lungs. Up until the age of, let’s say, three, he would cry continuously. At nighttime, I would sleep beside him and hold him with earplugs in because he would just be screaming. We knew there was something he was suffering from, but we didn’t know if it was his stomach or his head. 

So what was it like as a parent knowing that he was experiencing pain and not getting the help he needed? 

Donna: Even up until today, it’s extremely stressful. Like many parents of children who have any type of illness or special need, my life is kind of wrapped around appointments for Julian. However, having to deal with pain, you feel a little bit like you’re failing them — because you’re doing all these things; you’re making all these appointments. And yet you feel like it’s still not doing anything.

Julian: You feel disappointed in yourself. 

Donna: I do feel disappointed in myself. I’ve had this talk with Julian many times because he sees that I’m upset. And he asks me why, and I tell him it’s because I try so hard to do all these things, and I literally sit there in front of him saying, “Sorry, I wish I could do more.” 

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Is there anything you would like to see happen so that kids and young people in pain don’t get mis-diagnosed or under-treated?

Donna: Going into this [Ontario Brain Institute] talk, I was forwarded some questions that Dr. Fehlings had wanted to ask when we made a video for the talk. And I actually found out something that I didn’t really know. I had said to Julian, “Well, Dr. Fehlings wants to know, what’s best for managing your pain?” And Julian what did you say? 

Julian: Mindful meditation. 

Donna: And I was surprised. I know Julian had been working on mindful mediation to help him sleep and to calm himself. But I would not have selected that as what helps him the most in managing his pain. So one thing would be to make sure that doctors don’t only suggest medical options — I’m not saying hocus-pocus type of things, but tried-and-true therapies that do work for pain, like massage. We have done dry needling, which is similar to acupuncture, which helped for Julian. We only knew about that because my husband and I do massage, and I had done needling. But perhaps not all parents know that’s accessible to them. And they also don’t know where to go and who to talk to. 

Is there anything else you would like people to know? 

Julian: Don’t wallow in your pain. 

Donna: I think one of the things that he has discovered is that your brain has a lot control over what the rest of your body feels. And I’m not saying your brain can make the pain go away. But if Julian focuses only on how much pain he’s in, the pain becomes much worse. And so I think that’s a very important thing to remember: our brain’s the one that’s telling us that this is pain, and maybe we can kind of tell the brain to take it easy on us a little bit so we don’t feel it as much. 

To find out more about Julian and Donna Cappelli, watch this video

This interview has been edited for length and clarity.     

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