How to Manage a Child’s Pain

As sickle cell anemia gains more attention, pain management for patients has improved. But getting pain relief can still be a stressful experience, especially for children, their parents, and caregivers. The opioid crisis and racial bias may further obscure the problem in some emergency department settings. We asked three experts in children and pain for advice:

dr Greg Kato, a clinician who has spent more than 30 years treating children and adults with sickle cell disease

CSL’s top expert on sickle cell disease, Dr. Greg Kato says that pain control actually starts at birth with prompt diagnosis. Now that all 50 states are universally screening newborns for sickle cell disease, children in the US are far less likely to go undiagnosed and untreated.

“This is a tremendous improvement in public health infrastructure,” said Kato, who joined the company in 2020 from the Blood Science Center at the University of Pittsburgh’s Vascular Medicine Institute. He is now Executive Director and Global Product Lead, leading the research effort for a potential new treatment.

Once a child has been diagnosed, he recommends parents seek treatment at designated sickle cell centers. Kato explains why:

Patients can receive more consistent pain management if the medical system can develop standardized approaches for prescribing opioids to patients with long-term needs. At some or most sickle cell centers, a primary continuity prescriber of opioids is established for each patient, with back-up prescribers clearly identified. An individualized pain management plan is placed in the patient record for use by emergency department providers. These steps minimize the question of the appropriate dose and frequency of pain medication treatment. Patients and family members should advocate for their primary provider to implement these measures.

In my opinion, an ER who questions a number of opioid prescriptions and providers should notify the healthcare provider with the primary role in managing pain for that patient. Such a person should be clearly identified as the best judge of the appropriate prescription for the patient. With effective communication, escalation should be a last resort that is almost never needed.

Judith McClellan, social worker, parent of a child with sickle cell anemia, and sickle cell advocate living in North Carolina

McClellan, who lives in North Carolina, urged parents to educate themselves in two important ways. First, learn as much as you can about your child’s sickle cell disease and treatment, she said. Then do what parents are so good at: Become an expert on your own child, what works for them and makes a difference.

Standard treatment may not work for every child. Be sure to let the doctors know what works and what doesn’t work for your child. Know what medications and doses your child is taking and let the doctors know.

Make sure your child is part of the treatment team and that your doctor listens to what your child is saying about their pain. If your voice isn’t heard, ask a hospital social worker or patient advocate to come and help articulate your concerns to the doctor.

Parents can help by educating their child about their illness and how to articulate their pain to the doctor. Make sure that no matter what the doctor’s reaction, they remain steadfast in their description of the pain and don’t waver. Have a pain scale that your child can understand, relate to, and translate to their doctor. Help your child learn to differentiate between sickle cell disease and other chronic pain they may experience.

Find things besides medication that can help with pain relief, like a heating pad, massage, or a warm bath. Sometimes it can be helpful to do things with your child like watch a movie, play a game, or do crafts to distract them from the pain.

Rachel Rabkin Peachman, co-author of a new book from Harvard University Press, “When Children Feel Pain: From Everyday Pain to Chronic Illness.”

Peachman, who co-wrote the book with child psychologist Anna C. Wilson, PhD, agrees that it is the physician’s responsibility to take a child’s pain seriously and treat it appropriately. When that doesn’t happen, she says, it’s crucial that parents support their child.

“Even if you sometimes fail to get what your child needs in a particular instance, it is important for your child to know that you believe their pain is real and that you will fight to get them treated will,” she said. Here are some suggestions from Peachman and Wilson:

To increase your chances of good care, If possible, visit the same hospital or clinic for sickle cell anemia on a regular basis. If you see the same medical staff over and over again when your child is having sickle cell crisis, chances are they will get to know you and your child over time. Maintain your relationships with these doctors so they can learn how to best care for your child. It can also lead to a more personal connection and higher quality of care.

Come to the doctor or hospital prepared. For example, keep a record of your child’s medications and symptoms, and have your hematologist’s contact information handy. This way, when you and your child walk into an emergency room or emergency clinic, staff have a better sense of what can help your child most quickly—and which specialist to call to coordinate care.

Stay calm. Because anxiety and stress can make pain worse, try to help your child lower their stress levels as much as possible when they are in pain. While it can be difficult, offer your child distractions to distract them from the pain as much as possible. research shows that things like listening to music, playing a video game, or watching a video can really decrease pain perception. And while you’re at it, try not to show your own distress, because your concern will fuel your child’s fear and pain. Instead, take deep breaths, step away from your child when you need to discuss a stressful topic, and show your child that you are in control of the situation.

Check in with a social worker or care coordinator. If you feel that your child’s needs are not being met, ask to speak to a hospital social worker or nursing coordinator. These professionals should be able to help you raise your concerns or advocate for your child. And in the worst case, they can show you where to make a written complaint. Many hospitals are working to improve their protocols, so your complaint may compel the hospital to address an issue.