By Emily J. Parke, DO and Janet Semenova, CPNP‐AC
Chronic pain in the pediatric and adolescent population is becoming increasingly prevalent. Juvenile fibromyalgia, complex regional pain syndrome (CRPS), functional abdominal pain, chronic headaches, joint hypermobility, and neuropathic pain are all chronic pain conditions that commonly occur in adults as well as pediatric patients. However, the presentations and approach to treatment can vary significantly between the two populations.
The typical profile of a chronic pediatric pain patient is a female (approximately 80%) and in the age range of 11 to 13 years (1). Usually by the time the patient is seeking treatment, her function has decreased significantly. It is common for the patient to be a high achiever with good grades in school, and she may also be a high-level athlete, dancer, or gymnast. Commonly a major life event (such as divorce, death in the family, change in schools) as well as a trauma or medical diagnosis will incite chronic pain. There is a large psychological component to chronic pain in the pediatric population. At Phoenix Children’s Hospital where we practice, we utilize a multidisciplinary, multimodal approach to treat our pediatric patients with complex and chronic pain.
Approximately 25% to 40% of children with a chronic pain syndrome fulfill the criteria for juvenile fibromyalgia (2). The average age of onset is 13 years, and it occurs more commonly in girls. It is also not uncommon for the mother or close family member to have a diagnosis of fibromyalgia as well.
Besides daily pain, other common symptoms include fatigue, insomnia, headaches, and muscle stiffness or soreness. Patients may also have symptoms of irritable bowel syndrome, such as constipation, diarrhea or a typical alternating diarrhea-constipation pattern. They may also have an underlying mood disorder such as anxiety or depression.
Major diagnostic criteria include generalized musculoskeletal aching at least three sites for at least three months, absence of any underlying condition or cause, and at least five tender points (3).
Complex regional pain syndrome
Children with CRPS are less likely than adults to have an obvious inciting event and may have a more prominent psychological component (4). Cases of typical CRPS, such as those that may occur after trauma or surgery occur as well; however, they are less common. As with adults, the prognosis is more favorable if a diagnosis is made early in the acute phase. The mainstay of treatment is physical therapy and psychology. Medications such as gabapentin and pregabalin may also be used as adjunct treatment. Occasionally, it is beneficial to perform a low concentration local anesthetic epidural or a peripheral nerve block so that the patient can be a more active participant in physical therapy. (Related: Complex Regional Pain Syndrome: A Pediatric Case Report.)
Chronic abdominal pain
Almost 20% of all school-aged children present to the doctor with persistent or recurrent abdominal pain. It is more common in girls age 11 years and older, and it accounts for about 50% of visits to gastroenterologists (5).
Like other chronic pain syndromes, a diagnosis of chronic abdominal pain is made when there is a history of three episodes of pain within a three-month period that impairs the patients’ activities of daily living. Although most patients have already had multiple endoscopies and CT scans to work up their abdominal pain, signs such as nighttime awakenings, weight loss, or fever indicate that a full workup should be done to rule out an organic cause for the pain. However, a large percentage of patients end up with what is categorized as a functional disorder, which means they have symptoms that vary without any known identifiable cause.
The most common functional disorder is functional abdominal pain. This is a condition in which symptoms are present at least once a week for at least two months, or continuously for more than four to six weeks with no evidence of an organic cause. Patients usually experience some loss of daily activity and/or additional somatic symptoms such as headache, other body pain, depression, anxiety, or difficulty sleeping.
Tension headaches are the most common presentation of headache in children as in adults, with patients most often describing constant, bilateral head pain with a squeezing sensation. It is important to explore psychosocial factors to determine if there are significant issues in the child’s environment at home or at school that may be causing or contributing to their symptoms.
In addition to tension headaches, migraines also are frequently seen and typically present with unilateral pulsating and/or throbbing pain. Cluster headaches are generally unilateral and accompanied by lacrimation. Chronic daily headaches are also commonly encountered secondary to medication overuse. Patients with chronic daily headaches are frequently referred by a pediatrician, who may have already prescribed an opioid or other medications for symptom management. Multiple daily doses of opioids can contribute to chronic daily headaches, as well as sleep and mood disorders.
It is necessary to screen the patient for warning signs of increased intracranial pressure or neurovascular compromise upon initial intake. If the workup has been done before the patient is referred, there is usually no need to re-order imaging studies unless there is a change in symptoms. However, if the patient has not had a work-up and there are worrisome signs, the patient should be sent to a neurologist or headache specialist for further workup and evaluation before beginning a treatment plan.
Management of Pediatric Pain Conditions
In pediatrics, unlike adult medicine, medications are the smallest component of the treatment plan. At our institution we use a complex, multifactorial, multidisciplinary approach in the treatment of chronic pediatric pain patients. It is a comprehensive rehabilitative treatment model. Our goals in the treatment of chronic pain are focused on functionality. Unlike treatment of acute pain, our goal is not to completely eradicate pain, as for most of our patients that may not be realistic, and could set them up for failure and disappointment. Instead, the focus is moved away from the pain itself and the numbers on the pain scale. The ultimate goal is to get them back in school, involved in social activities, and back to leading a normal functional life.
Psychosocial factors play a major role, and should be addressed before starting patients on medications, since it is known that psychosocial factors contribute heavily to pediatric patients’ perception of pain (5). In times of stress (such as divorce, family arguments, bullying at school, physical or sexual abuse), pain tends to intensify. The goal is to teach them how to cope with pain and what to do when they have a pain flare.
Approach to treatment
At the patient’s first visit, we (patient, family, and care providers) must all agree that the child’s workup for pain is complete. This is probably the hardest part for parents to accept, as it is common for them to continue to look for an answer or specific diagnosis. Many patients come to our pain clinic after they have seen several specialists for their condition, and have been told that there are no further work-up or treatment options. During the workup process, which may have taken months or even years, the childrens’ lives are highly disrupted by multiple doctors’ visits and testing. This prevents them from reintegrating into a normal family and social setting. In order to proceed with a successful treatment plan, it is of great importance that we all agree during the initial visit that no further testing to look for a cause or diagnosis will be done.
We use a multidisciplinary and multimodal approach, and treatment is individualized for every patient and family. The first step is education. We recommend that all of our parents and adolescent patients read a book called Conquering Your Child’s Chronic Pain, by Dr. Lonnie Zeltzer, which follows the same approach that we do for the treatment of chronic pain (6). We recommend that our children read Be the Boss of Your Pain, which offers simple solutions and ways for them to cope with their pain such as journaling, meditation, and aromatherapy (7). These relatively simple things empower children to take control of their pain and not necessarily rely on their parents or medications.
Almost all of our patients are referred to physical and/or occupational therapy. Regaining function and desensitization are large components of returning to a normal life. The goal is to get them away from using all unnecessary assistive devices, such as wheelchairs and crutches. Patients will benefit from the many positive aspects of exercise including improved fitness, reduced pain and fatigue, and release of β-endorphins (2). We also encourage our patients to participate in yoga, which will increase strength and flexibility as well as help them learn breathing and rrelaxation techniques.
We also refer almost all of our patients to psychology for cognitive behavioral therapy (CBT), biofeedback, guided imagery, self-hypnosis, and other coping techniques. Cognitive behavioral therapy changes the emotional and physical response to pain (8). Many of our patients and families have poor coping skills. This leads to unnecessary visits to the emergency department and doctor’s offices, school absences, and withdrawal from normal social activities. Teaching patients and families these coping techniques is of paramount importance. There is also a role for psychiatry in the treatment of mood or other psychiatric disorders that may be affecting the child, commonly anxiety and/or depression.
Many care givers become focused on asking the child about their pain and what medication to give to make it better, which can be counterproductive to progress towards restoring functionality. We ask that families let the child tell them about their pain and feelings, rather than soliciting it from them. Many families provide an undue amount of sympathy. Excessive emotional responses to the child’s pain can create a negative feedback cycle. Constantly asking about the child’s pain amplifies the child’s perception of pain (6). There may also be dysfunctional family dynamics contributing to their child’s perception of pain. Chronic pain can cause significant stress to the whole family. Siblings may suffer because parents are often so focused on the child with pain that they may neglect to give the other children in the family the attention they need. In these situations family counseling is recommended. The goal is to identify and manage the specific family dynamics and stressors that are contributing to the child’s pain and family dysfunction. Another goal is to improve communication and support parents and families, as it can be challenging to live with a child who has chronic daily pain (9).
Support groups are also helpful to the success of our patients. We have one group for children and a separate, additional group for parents and families. It is important that patients have someone to talk to and see others who have made improvements such as attending school again, participating in activities, and spending time with their friends.
Pharmacologic therapy is the smallest part of treating the pediatric patient’s chronic pain. However, there are situations where prescription medications may be appropriate. Methadone can be particularly helpful in weaning patients off other opioids, in part due to its NMDA-receptor antagonism. It is also very easy to titrate and it is safe, especially at lower doses. Clonidine, an alpha agonist, can be a useful adjunct analgesic, and also helps treat symptoms of anxiety. The membrane stabilizer class of medications (such as gabapentin and pregabalin) is also helpful in treatment of neuropathic pain. Medications for underlying psychiatric disorders can also be used for adjunct analgesia as well. Duloxetine is used often due to its serotonin and norepinephrine reuptake inhibitor action that can help with anxiety/depression, as well as neuropathic and chronic pain symptoms. Although tricyclic antidepressants are used less commonly because of their side effects (such as somnolence, hypotension, and cardiac conduction disturbances), it has a place in patients who have failed other medications such as an SSRI or duloxetine, especially those with sleep disturbances.
In addition, there is a place for opioids within the hematology/oncology patient population. Sickle cell patients are particularly unique in that in between crisis they typically have no pain and are not on chronic daily opioids. However, due to the chronicity of the disease, they will have an acute and sometimes sub-acute need for opioid therapy in addition to acetaminophen and NSAIDS. There is also a large role for opioids in the palliative care setting as well. However, opioids are not routinely advised in the general treatment of pediatric chronic pain, and may further contribute to poor sleep patterns and mood disorders.
Many children with chronic pain, like adults, have disturbed sleep patterns (2). Pain syndromes lead to decreased sleep latency, shortened total sleep time, decreased sleep efficiency, and excessive nighttime movement. The importance of restorative sleep and good sleep hygiene habits cannot be overemphasized. Simple actions such as eliminating caffeine from the diet and creating a healthy sleep environment, as well as regular exercise, can make a significant improvement in sleep. See Table 1 (below) for a complete list of sleep hygiene recommendations.
Most children today generally have very poor eating habits, with approximately 80% of adolescents failing to eat the required number of fruit and vegetable servings per day. Poor hydration and nutrition can be contributing factors to poor energy levels and sleep patterns, which will, in turn, affect pain levels. However, it may be difficult for patients to admit they have poor eating habits due to a lack of nutritional education, as well as to get them to make lasting healthy dietary changes. See Table 2 (below) for general nutrition recommendations.
We also encourage patients to seek out complementary and alternative therapies. Approximately 60% of pediatric patients have tried at least one complementary and alternative medicine (CAM) approach to treat their pain. However, finances are often the main limiting factor for families, as insurance coverage for CAM therapeutic modalities varies tremendously. At our institution art and music therapy, hypnosis, yoga, and acupuncture are available.
Patient and family education is a significant part of a successful treatment plan. While it is important to validate the symptoms the patients’ are experiencing, it is equally important to take the focus away from the pain itself. Instead, the focus is placed on function. It is vital that ppatients understand that they must want to get better and must comply with their treatment plan. The patient must take responsibility and be accountable for their own health, as they are the key to their own success.
1. Sherry DD, Malleson PN. The idiopathic musculoskeltal pain syndromes in childhood. Rheum Dis Clin North Am. 2002;28(3):669-685.
2. Anthony KK, Schanberg LE. Pediatric pain syndromes and management of children and adolescents with rheumatic disease. Pediatr Clin North Am. 2005;52(2):611-639.
3. Yunis MB, Masi AT. Juvenile primary fibromyalgia syndrome. A clinical study of thirty-three patients and matched normal controls. Arthritis Rheum. 1985;28(2):138-145.
4. Sherry, DD. Short- and long-term outcomes of children with CRPS Type I treated with exercise therapy. Clin J Pain. 1999;15(3):218-223.
5. Collins BS, Thomas DW. Chronic abdominal pain. Pediatr Rev. 2007;28(9):323-331.
6. Zeltzer L, Schlank CB. Conquering your Child’s Chronic Pain. New York: HarperCollins; 2005.
7. Culbert T, Kajander R. Be the Boss of Your Pain: Self Care for Kids. Minneapolis, MN: Free Spirit Publishing; 2007.
8. Eccleston C, Palermo TM, de C Williams AC, et al. Psychological therapies for the management of chronic and recurrent pain in children and adolescents. Cochrane Database Syst Rev. 2012. Dec 12;12:CD003968. doi: 10.1002/14651858.
9. Sherry DD, Diagnosis and Treatment of Amplified Pain Syndromes The Pain Practitioner, Spring 2006.
Emily J. Parke, DO, is a pediatric anesthesiologist for Valley Anesthesiology Consultants and joined Phoenix Children’s Hospital’s department of pain management in 2009 as the department’s vice chair of pediatric pain. She is board-certified in anesthesiology by the American Board of Anesthesiology and was fellowship trained in pediatric anesthesiology. She is a member of several professional associations.
Janet Semenova, BSN, MSN, CPNP-AC, has been a pediatric pain nurse practitioner in both the inpatient and outpatient clinics at Phoenix Children’s Hospital since 2009. She regularly sees patients from birth to 21 years old suffering from a range of acute and chronic conditions. She also works with Arizona State University to provide clinical pain management opportunities for pediatric nurse practitioner students and is a current member of the American Academy of Pain Management.
This article was originally published in The Pain Practitioner, Fall 2013.