Authors: Weston G, Sweeney M, Zeltzer L.
Pract Pain Manag. 2022 November/December;22(6).
When children come to your office due to persistent or chronic pain, odds are that you are not going to be their first experience with the medical field. They have, most likely, already filled out questionnaires, participated in assessments, undergone a variety of tests, and possibly had procedures and/or surgeries in attempts to alleviate their pain. They have spent hours in waiting rooms, spent nights in hospitals, and told their story many, many times.
In this article, we – a social worker who grew up living with a chronic pain condition, a public health researcher who also grew up with chronic pain, and a physician with decades of pediatric pain management experience – aim to provide some insight on how to have constructive conversations with these children and their caregivers.
We want to preface the following “do’s and don’ts” by acknowledging that there will be exceptions. This list has been structured around the assumption that these are new patients with whom you do not already have rapport, and therefore, they may already have a certain level of resistance that you have to break through to establish trust.
Use a Mind-Body Approach
Patient education about the mind-body connection is key but should be explained delicately. Children in pain have already encountered people who think the pain is in their “head.” This alone may add opposition to words such as “mind” or “psychological,” while the concept of “psychological” can feel foreign to their experience of bodily symptoms.
Apply a Biopsychosocial Model
We are all multifaceted individuals and deserve to be acknowledged as such. The biopsychosocial model recognizes the biological, psychological, and social aspects parts of us that interact together over a lifetime. Explain that some of those parts are out of our control, but the way we interpret and relate to them are not. This can be an empowering message to children when delivered properly.
Explain the Over-Active Nervous System
When children can generally understand what a nervous system is, it can be helpful to explain how their nervous system might be on “overdrive” with lots of electrical signals moving through it causing pain, especially along pain nerves. The reason that tests and x-rays do not show a reason for the pain (pathology such as a tumor, infection, or chemical imbalance) is because the electricity that is the problem cannot be seen on our tests.
Past trauma may go unrecognized by a child and their parents/caregivers. Significant trauma, such as a divorce, parent major illness or death, or major car accident are typically reported if inquiries about traumas are made. However, other traumas such as bullying at school, death of a pet, moves, and other events that might seem insignificant to parents may have major impact on a child and indicate a need for an inquiry.
Whether the traumatic events are still occurring or not, trauma is one of those pieces to the puzzle that requires elucidation for the puzzle of chronic pain to be solved and adequately resolved.
One of the most common tools used clinically to assess pediatric pain is the Numeric Rating Scale (NRS). This 1 to 10 scale asks, “How bad is your pain today…or this week, where 1 is no pain and 10 is the worst pain possible?” Sometimes a child will say “15!” These numerical rating scales are better used in research to assess changes over time, but do give information about the child’s level of pain-related distress.
To explain, children tend to do more things and become more active before they experience a reduction in their pain. That is, their function increases even with the same amount of pain suggesting that their coping with pain and self-efficacy have improved. They may experience and inform parents that they are still suffering, and pain is often the last thing to go. Some pediatric patients may still experience some pain that does not hinder their function. They also may want to let parents know about their “suffering” fearing that parents might expect more of them than they feel able to accomplish. The best way to evaluate improvement is by asking about school, physical activities, and social activities.
Children who have been sedentary will likely experience more pain initially as they begin to use their muscles more than previously. Muscles not used become weak and working those muscles takes effort and that part of the body can be painful for anyone until the muscles get used to being used. Consider the feeling of going to the gym after a sedentary vacation and leaving feeling sore.
Don’t Imply Psychosomatic Symptoms or “Pseudo” Pain
While the word “psychosomatic” may be correct medically in its definition to describe the inherent mind-body connections, it is often viewed as triggering and invalidating children’s experience of bodily pain. Much like adults, some children and teens may equate the term “psycho” or “psychological” to mean “in your head” or “made up.” This stigma can be especially true in pediatric chronic pain, when many young people feel the need to justify and/or demonstrate the authenticity of their experience.
Don’t Offer a Dead-End Referral
When strategizing, be strategic with referrals. A dead-end referral is a sure way to increase your patient’s doubts about your ability to help. Any referral should be accompanied by a conversation and explanation so the patient and caregivers fully understand why and how this next step will help. Such context is particularly beneficial when making a mental health professional referral.
While clinicians understand the benefits of psychiatric and/or psychological supports to the healing process, an explanation to the patient and family is useful. Mental health care could be termed “physical therapy for the brain.”
Throughout your patient contact, it is important to be confident, but do not pretend to know everything. Be open to learning and make it a point to do so. There are many different moving pieces that interact with each other when managing chronic pain, so giving time and space to gather all the pieces can help paint the full picture.
What is your story? Tell me about yourself.
Having the opportunity to answer open-ended questions, and especially share a narrative, can be therapeutic and empowering. This approach demonstrates that your patient’s story is important and valued. Efficiency is a concern for medical professionals, however, taking the time to understand a patient at the beginning of a relationship can save significant time down the road. Think of it as an investment in the future of your patient-practitioner bond.
Open-ended responses may also shed light on something you not have thought to address. For example, you may learn that certain patterns emerged in the child’s life long before symptoms occurred. Perhaps your patient was sensitive to sensory experiences as a young child, had a history of anxiety and separation problems, or faced trauma in the past. Understanding the whole person is more important than focusing on when symptoms started. Critical traits or experiences present before the current symptoms began may hold the keys to effective treatment.
Asking about past treatment is another way to learn about a patient’s past attempts to identify the cause and relieve the pain. Learning about past treatment trials can not only save time and potential pushback while providing a space for the child’s opinions.
This question can further familiarize you with the patient’s thought processes. For example, children may say they already tried hypnotherapy and didn’t find it helpful because they couldn’t follow along. This may be a hint that the patient is a concrete-thinker who finds abstract and pictorial concepts challenging.
Is there any relevant developmental history?
Conditions such as autism spectrum disorder and sensory disorder may be sensitive to physical sensations, people/crowds, or confusing situations. With this history, treatment plans can be tailored to the child’s needs. For example, a solitary activity might initially be preferable to a group event.
Have there been any learning challenges (such as ADHD, dyslexia, and others)?
Questions about school and learning difficulties can shed light on other layers that may add challenges creating further stressors that exacerbate pain, especially at school or with school homework and projects. Dyslexia may have caused avoidance of reading, while ADHD may have created organizational difficulties with homework and paying attention at school. Identification of educational challenges can reduce stress-load on the body that may be contributing to the child’s pain.
A “review of systems” may uncover other sites of pain or other symptoms not previously reported as the main reason for seeking help but may be contributors to the main pain problem and need to be addressed. For post-menarchal girls, asking about dysmenorrhea is important since it may become a sensitizer of other areas of pain.
How is your sleep?
Inquiries about the onset and maintenance of sleep can illustrate a picture of overall well-being, and insufficient sleep can be a contributor to the pain problem as well as to daytime fatigue. Good quality sleep needs to be addressed before the pain will resolve.
How is your diet? Any significant weight changes?
Eating patterns and food choices not only inform a child’s nutritional status but also may elucidate an eating disorder. Some children with irritable bowel syndrome will attribute their abdominal pain to a variety of foods and develop a restrictive eating disorder.
What is your family history?
Perhaps there are others in the family who have persistent pain. Learned pain behavior from a parent with chronic pain can influence a child’s function and experience of pain as threatening to their well-being.
The majority of a clinician’s history-taking is carried out with the child and parent/caregiver present. However, it is also important to spend some alone time with the child, especially with an older child or adolescent. This time should be explained as the private clinician/patient time to address items the child can talk about freely and not be put into the main medical record (unless the child reports plans for self-harm or harm to others).
This time may be used to take a psychiatric history, including questions about mood and potential suicidality, anxiety in all its forms (general, anticipatory, social, panic disorder, PTSD, OCD, and phobias). Thought disorders such as visual or auditory hallucinations and problems with concentration, learning, memory, and attentional focus can be addressed as well. In addition, ask adolescent-appropriate social questions regarding substance misuse, sexual or other abuse, family problems, and gender identity, preference, and physical sexual activity, as well as use of STD barriers and contraception if indicated.
Avoid questions that can be perceived as accusatory. Children with chronic pain often feel “blamed,” sometimes by siblings for getting extra attention or not “pulling their weight when it comes to chores.” They may feel like they are the cause of ruined family outings or the cause of family financial stress.
Any questions that label, accuse, or blame will likely be met with resistance that can impair your relationship with the child.
Nicole* is a 14-year-old female who returns to the pediatrician with chronic headaches that have caused her to miss increasing amounts of school. She has already been referred to a child neurologist for possible migraine but has failed both the abortive medications as well as topiramate, propranolol, Depakote, and various vitamins and riboflavin that are often used for daily headaches. Brain MRI was normal.
Clinician: Can you tell me about your head pain?
Nicole: I have these headaches that are all over my head, are there all the time, and sometimes are really bad. I have seen several neurologists but nothing has helped. I am missing a lot of school because my head hurts too much to concentrate or look at a computer screen. Before I got these migraines, I had all A’s in school. I was also on the soccer team and took piano lessons after school. Now I can’t do anything because anything I do makes my headache worse.
Nicole: About 2 years.
Clinician: Tell me more about your headaches. How often do they come on and how long do they usually last? Do you have any time with no headache?
Nicole: I have them every single day. Sometimes they are really bad for a few hours, but sometimes it is all day.
Clinician: And what do you do when the headache gets bad?
Patient: I lay in my bed. I turn off all the lights and tell everyone in my house to be quiet. Noise makes my headache worse.
Clinician: Can you tell me the other ways having these headaches impact your life?
Nicole: When I get a headache, I can’t read or look at a screen. That’s why I don’t go to school most days – because I am afraid of getting a headache in class and not being able to open my eyes. One time, my migraine got so bad I needed someone to walk with me to the nurse’s office to call my mom. That was really embarrassing, so I don’t like to go to school because I know I’m just going to get another headache.
Nicole: I can’t do anything. I lie in bed hoping the headache will get better. It is terrible and no one understands how bad it is. I used to draw a lot, but since I can’t see with my eyes closed there’s no point.
Clinician: I can understand how you may feel that way, but did you know there are artists who draw without seeing or with their eyes closed? Sometimes they create very interesting and surprising art! It might be interesting to see what happens if you bring markers or pencils and paper next time you have a bad headache and trace your fingers and see what else your fingers draw. You might even find that sitting at a table and drawing with your eyes closed when your headache is bad leads to even more interesting art that you can complete as your headache feels better.
Nicole: I don’t know if I can do this since my head hurts so much.
Clinician: It will be interesting to see what your brain and hands do this week; let’s meet in a week and bring in whatever your hands did during a headache this week.
Nicole: (showing the doctor pages of interesting colorful abstract art depicting what her head pain looks like)
Clinician: It looks like the creative connections between your brain and hand knew what they wanted to do. That is so cool! You may be setting up new creative nerve pathways because your brain knows the creativity of someone who plays piano and soccer. I wonder what would happen if you brought a notepad and markers to school (with an explanatory note to your teachers) to allow your hand to automatically begin drawing at the very start of a headache. It might be interesting to see if your brain-hand connection begins to sense the beginning of a headache flare even before it starts and begins drawing to prevent it? Let’s meet in 2 weeks to see what happens.
(2 weeks later)
Nicole: My hand now starts to draw and the headache goes away or gets better … it is so weird!
Clinician: Sounds like you just created a new brain-hand pathway that turns off the headache! Great job!
Evaluating and treating children with chronic pain can be intellectually stimulating and clinically rewarding, while also requiring patience and, sometimes, delayed gratification. Understanding and resolving chronic pain is like solving a multi-factored, complicated puzzle where history-taking is the most important part of the solution. The physical exam should add information to the solution.
Typically, children who present with chronic pain are not “quick-fixes” and their care requires creative thinking. Uncovering previously unaddressed ADHD, learning difficulties, and autism spectrum disorder as well as diagnosed or undiagnosed psychiatric comorbidities is often key. When taken together, unraveling the puzzle is the joy of treating chronic pediatric pain.
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