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When Your Child is Living with Chronic Pain

Last updated: 07-21-2020

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When Your Child is Living with Chronic Pain

If there’s anything worse than living with chronic pain, it’s having to watch your child endure it on a daily basis and feeling powerless to alleviate their suffering. As a parent, you want to do everything within your power to ensure that your child is pain-free, so you do all you can to make sure they get the appropriate treatment.

Sometimes, you may not realize how your own response to your child’s pain can play a role in how they feel as well. In fact, research shows that how a parent or caregiver reacts to a child’s pain can actually influence their pain experience.

It’s natural to feel down when you have a child with a chronic condition and it’s not uncommon for parents of a child with a chronic health problem or disease to be depressed themselves. In fact, parents of children with chronic conditions displayed small to moderate elevations of depressive symptoms compared with parents of healthy, nondisabled children, according to a meta-analysis of 460 relevant studies published in theJournal of Pediatric Psychology.

In another study of 60 children age 10 to 16 who were undergoing surgery at the Seattle Children’s Research Institute, researchers learned that those patients who had less sleep leading up to the surgery and whose parents catastrophized the pain experienced more intense pain two weeks after their procedures.Pain catastrophizing” refers to the tendency to exaggerate a pain experience, to ruminate on the painful experience, and/or to feel more helpless about the experience.

Chronic pain in children can occur for many reasons. Perhaps the common reason for pediatric patients to seek medical care are headaches, which have a number of causes, such as trauma, a genetic predisposition, or an intracranial mass. Recognizing that a child’s headache can be the result of primary or secondary causes is key because treatment will vary. Kids can get fibromyalgia, too, known as Juvenile Primary Fibromyalgia Syndrome (JPFS). This musculoskeletal condition affects the muscles and joints as well as the ligaments, tendons, and skin. Irritable Bowel Syndrome (IBS) in children can include continuous or recurrent lower abdominal pain or cramping, along with diarrhea, constipation, or both. Juvenile Idiopathic Arthritis (JIA), a chronic autoimmune disease, is another cause of ongoing pain in children, affecting the joints. Arthritis affects about 300,000 children in the US. 

It’s not just health conditions that can cause chronic pain in children. Some 5 million children in the US have surgery each year, and for 40 to 60% of these young patients, coping with moderate to severe post-op pain is a significant issue.

Overall, about 5% of children in the United States have chronic pain, says Kern Olson, PhD, a clinical health psychologist with a specialty in pain management. “Chronic pain is not rare in children,” he says. “I would say the most common is headache, followed by the muscular and abdominal disorders.” If you, as a parent, suffers from pain, it’s more likely that your child also will have pain, he says. “Pain does run in families.”

How a parent reacts to a child’s pain—and their own pain —is crucial in terms of teaching the child how to cope, explains Dr. Oslon, who also serves as an editorial advisor to PPM. “Keep in mind that kids learn by modeling and by imitation,” he says. “If a parent is too over-protective and over-reactive, this can have an adverse effect on the child.”

It’s okay to validate your child’s pain but you should also encourage them to be resilient, says Laura Simons, PhD, an associate professor of anesthesiology, perioperative, and pain medicine at Stanford University Medical School.  Dr. Simons, with her collaborators, Amy Holley, PhD and Anna C. Wilson, PhD, at Oregon Health Sciences University, developed a screening tool (called PRISM which stands for Parent Risk and Impact Screening Measure) to help assess pain-related distress and behavior in parents whose children have chronic pain. She says it is important that parents who are experiencing a lot of distress and who struggle with how to help their child in pain get support.

“We have found PRISM to be a pretty good predictor of parents’ distress and behavior in the context of their child’s pain as well as a good predictor of the child’s functioning,” Dr. Simons says. “A high-risk categorization of a parent tells the provider that they need to address the parents’ distress as well as the child’s distress.” The screening tool would typically be administered by a pain clinician, whether a physician, pain psychologist, or behavioral health specialist, and is available for viewing on the researchers’ website at 

As for working through the catastrophic thoughts, Dr. Simons advises parents to be empathic, positive, and realistic. She suggests that you might say to your child, ‘It seems really difficult now and over time it will get easier to navigate.’”

Ensuring that your child gets enough sleep and eats a healthy diet is one way that parents can help, Dr. Simons says. Sleep is especially crucial when living with a chronic condition because poor sleep can worsen pain.

It’s also important for the parent of a child with chronic pain to have a game plan in place for the school day and for days that the family spends together. “This might involve taking walks as a family, building in breaks during the school day, and ensuring that the teacher is aware of the child’s condition,” Dr. Simons says. “It’s important to be compassionate and understanding, and to encourage your child to keep going even in the presence of pain.” If you keep a child home from school due to a chronic pain condition, even if you are just trying to shield them from the stresses of the day, this sends a message that the child is not capable or strong enough to manage, she explains.

“Have a list of pain coping tools such as apps and breathing exercises,” Dr. Simons says. “And plan scaffolded activities that would include breaking things down into manageable steps and working through them progressively, whether it is increasing time spent at school or returning to a sport or club,” she says.

If your child’s condition is severe enough to warrant a significant number of school absences, you might talk to your doctor about a 504 medical plan, according to Lawrence Robbins, MD, and Alison Alford, MD, who specialize in chronic headache and migraine.

This type of plan can include a call for late starts, shortened days, excusal from gym class (or limited physical activity), extra time on exams if appropriate. For those with chronic headache, the plan may include permissions to step out of class if loud noise exposure becomes a problem, eating lunch in an alternative, quieter location, and wearing mildly tinted sunglasses. In addition, a part-time school/part-time homeschool schedule or summer classes that feature smaller groups may be beneficial and help them keep up with their studies.

Children with chronic pain who are able to stay in school and participate in gentle physical activities are less likely to be disabled in the long run, says Dr. Wilson, an associate professor of pediatrics in the Institute on Development and Disability at Oregon Health & Science University. “They have a better quality of life and less pain over time,” she says. As noted above, “This can require some accommodations and creativity from parents and teachers, but it is worth it in the long run.”

Dr. Wilson recommends the following resources to parents of children living with chronic pain:

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