Your child’s primary physician, complex care or palliative care clinicians can work with you to identify indicators that your child is in pain. You may also ask to consult with a pain specialist.
Pain Behaviors
Share
Your child’s irritability may signal pain, but there also will likely be times when you are uncertain whether your child is in pain. They may or may not express pain with sounds or body language. Know that this is common for parents of children with SNI to feel uncertain, and difficult when you want to soothe your child as quickly as possible. Identifying the source of pain and determining the course of treatment is often a process of elimination and can take time.
Researchers have asked parents to describe what they see when their child with SNI has pain. These features are called pain behaviors. Many children with SNI show similar behaviors, but it is important to know that your child may also show pain in their own way. More typical pain behaviors include:
- Change in facial expression: grimace, frown, clenched jaw, distressed look, eyes wide open, or non-expressive face
- Muscle tensing or tightening at intervals: stiffening of legs, draws up arms, clenched fists, tremors or jerks, tense and still, kicking, thrashing
- Change in body position: back arching, rigid and stiff, head movement
- Change in vocalizations: crying, soft moaning, grunting, gasping
- Change in interaction: withdrawn, less active, more aggressive
- Change in skin or complexion: pale or flushed, sweating
- Lack of response to efforts to console or comfort
Pain assessment tools can help others identify pain in your child. These tools are often suggested when a child undergoes surgery or another medical procedure. It can be helpful to work with your medical team to establish your child’s pain baseline and personalize a tool during a time when your child is well. As your child’s condition changes, you will want to revisit the tool and identify any changes in your child’s pain behaviors.
It is common to be uncertain as to whether your child’s behaviors are indicating pain, or what the cause of the pain may be. While it is difficult to cope with uncertainty, know that as you live with your child’s illness your certainty will increase. Your medical team can tell you what is known about pain expression in children with SNI. Develop an understanding with the team: describe what you see, or share a video of your child during an episode.
It is possible that a clinician who is new to the team may question whether your child’s behaviors indicate pain. Knowing your child’s baseline, how they act when not in pain, and having an individualized pain assessment tool can help you explain what you and other clinicians have identified. Trust yourself to advocate for your child’s needs.
