Ease their Pain: Caring for Kids with Chronic Pain
August 28, 2013
Living in constant pain is difficult for anybody—but for children and adolescents, it can be almost unbearable as their life experiences change as a result of the pain. As a parent or caregiver, you may feel helpless and frustrated as you watch your child's life change. You child may drop out of sports and other outdoor activities, avoid personal and family responsibilities, miss school and stop spending time with friends, experience increased stress and/or develop symptoms of depression and anxiety, give up their dreams and goals, and feel increased hopelessness.
Chronic childhood pain can stem from various medical conditions or diseases, including complex regional pain syndrome (CRPS), chronic headaches (either migraine or tension-type), fibromyalgia, dermatomyositis, Crohn's disease and juvenile rheumatoid arthritis, among other sources of pain in the body, such as those involving the back, chest and abdomen. Chronic pain can also result from trauma, such as an automobile accident from a while ago. Some cases of chronic pain are idiopathic (with no known cause) or may be the result of psychogenesis (the mind creates the painful situation). Regardless of the cause, the pain is real. But your child is not alone...nor are you. Various treatments and techniques can be applied to get your child back to doing the things he or she loves to do—despite the pain.
About the Speaker
Gerard Banez, PhD is a pediatric psychologist at Cleveland Clinic Children’s, where he serves as Program Director for the Pediatric Pain Rehabilitation Program and leads the Behavioral Pediatrics Treatment Service. His specialty interests include pain-associated disability syndrome, pediatric functional gastrointestinal disorders, elimination disorders, vocal cord dysfunction, recurrent headache, pediatric behavioral medicine, pediatric biofeedback and self-regulation skills training, and pediatric pain rehabilitation.
Dr. Banez completed his fellowships in pediatric behavioral medicine and clinical/pediatric psychology and pre-doctoral internship at Children’s Hospital and Harvard Medical School of Boston. He earned his doctorate in clinical psychology from the University of Vermont, in Burlington, Vt.
Let’s Chat About Ease their Pain: Caring for Kids with Chronic Pain
Moderator: Welcome to our ‘Ease their Pain: Caring for Kids with Chronic Pain' with Cleveland Clinic pediatric psychologist Dr. Gerard Banez. We are very excited to have him here today! Let's begin with the questions.
Conditions Associated with Pediatric Chronic Pain
Sneld: What are the typical conditions associated with chronic pain in kids?
Gerard_Banez,_PhD: Complex regional pain syndrome, headache, abdominal pain and fibromyalgia are among the most common chronic pain conditions seen in an interdisciplinary setting (e.g., a general pediatric practice). Kids who have these conditions often have significant functional impairment. Accompanying symptoms include sleep problems, eating difficulties, and emotional/behavior concerns.
Usual Sites for Pediatric Chronic Pain
Hogwarts Home: Where is chronic pain typically exhibited in children—back, stomach, or head? Or can it be really anywhere?
Gerard_Banez,_PhD: Chronic pain can be seen almost anywhere in children. The most common locations we encounter pain are the limbs (arms, hands, legs, and feet), head, stomach, and joints. Some kids we see report and feel pain everywhere.
kate52672: What are the indicators that headaches are serious? How do I know that my daughter's headaches aren't just stress related? She really only gets them throughout the school year. During the summer, she gets very few.
Gerard_Banez,_PhD: When headaches get in the way of a child's physical, psychological, school or social functioning, they are serious. Stress-related headaches are very real and can be debilitating. The fact that she gets them only during the school year is better than if she got them year-round and is suggestive of potential causes (e.g., academic stress). It may also point to certain treatments over others. Treatment, however, will be important because school is nine to ten months out of the year. Headaches over that period of time can affect her school, social and emotional function.
silverandgold: My daughter has been getting headaches and migraines starting around the age of five years old. Will this have an impact on her development as she gets older?
Gerard_Banez,_PhD: With appropriate medical care, psychological care and other therapies as indicated, kids with migraines and other pain conditions can maintain normal activity and achieve to their potential. With lifestyle changes, this does not have to have a negative impact.
Chronic Stomach Pain Causes
AshleysGram: My grandson is constantly complaining of stomach pain. His parents have taken him to his pediatrician, but 'everything checks out'. What causes chronic stomach pain in kids?
Gerard_Banez,_PhD:Stomach pain is very common among kids. More often than not, the medical workup is negative ('everything checks out'). The stomach pain that kids report is real, but there is no serious, life-threatening condition that explains it. The many contributors to the pain include poor diet, stool problems, slow digestion, stress and anxiety. Effective treatment of childhood stomach pain may consist of medical management, including medicine to treat the pain, psychological services to assist in pain management and coping, and dietary interventions.
Larry&Sally: We live in a very small town in Ohio. Our family medicine doctor thinks that my daughter may be exhibiting the symptoms of fibromyalgia and not just normal growing pains. Our doctor said that we need to see a specialist. Do you have any suggestions about the next steps to take? Her pain seems to be chronic, and throughout her body (especially near her joints). She is often quite tired.
Gerard_Banez,_PhD: I agree with your doctor. It sounds like you should take her to see a specialist. Several pain specialists can be involved in assessment of fibromyalgia. In our setting, a rheumatologist or physiatrist (physical medicine and rehabilitation doctor) are often the next steps in the evaluation of fibromyalgia.
Luv2Read: Is arthritis considered a chronic pain problem? Do you ever collaborate with rheumatologists on the treatment of kids with arthritis?
Gerard_Banez,_PhD: Yes, arthritis can become a source of chronic pain for children, but not all kids with arthritis will have chronic pain. Nor do all of these children with arthritis develop significant functional problems. The collaboration between all providers, including a rheumatologist, is central to the effective treatment of chronic pain.
Complex Regional Pain Syndrome and Reflex Sympathetic Dystrophy Diagnoses
4Kids&Dog: What are the typical signs and symptoms of complex regional pain syndrome (CRPS)? I've been reading about it in fear that my 15-year-old daughter may be experiencing it.
Gerard_Banez,_PhD: Complex regional pain syndrome or CRPS is a very complex and challenging pain condition that many are unfamiliar with and few understand. It often— but does not always—develop following physical injury or trauma. The limbs (arms, hands, legs and feet) are most often affected. Pain is more than expected and persists longer that predicted. Among the common symptoms are allodynia (extreme sensitivity to touch), change in color, change in temperature and swelling. Children with CRPS are at risk for impaired function in the affected limb or area, and physical therapy is especially important for recovery.
kbrown: What are the symptoms of CRPS and RSD?
Gerard_Banez,_PhD: The symptoms for Complex Regional Pain Syndrome (CRPS), as well as reflex sympathetic dystrophy (RSD) include:
- Pain in one or more limbs and/or ankles, feet, or hands
- Pain disproportionate to original injury
- Pain that lingers long after trauma has healed
- Pain that appears after a traumatic event, like a broken bone, automobile accident or bad fall
- Pain described as burning or sharp, coldness and swelling in the affected limb(s), and allodynia (intense pain with light stroking or touching of the skin)
- More common among pre-adolescent and adolescent girls than boys by about 5:1
- Usually seen in girls who engage in sports, dancing or gymnastics
- Affects between 200, 000 and 1.2 million Americans overall
The actual cause of CPRS remains unknown. However, overuse injuries, trauma, psychological stress, nutritional factors, hormones are possible contributors. CRPS reflects dysfunction (overreaction) of the autonomic nervous system (ANS), which causes transmission of pain signals after the initial injury.
kbrown: How is complex regional pain syndrome (CRPS) or RSD (reflex sympathetic dystrophy) diagnosed?
Gerard_Banez,_PhD: There is no single test for CRPS or RSD. Clinical diagnosis is made by patient history, thorough examination, and the results of numerous tests (to rule out serious causes, including neurological, vascular, breaks, tears and inflammation)
Neither CRPS nor RSD are life-threatening, but it can become chronic and even spread to other parts of the body. It can last for years and disrupt lives by interfering with daily activity. It is also noted that children with CRPS miss 25 percent of school days.
kbrown: Will complex regional pain syndrome (CRPS) or RSD (reflex sympathetic dystrophy) go away?
Gerard_Banez,_PhD: Early diagnosis and treatment offer the highest probability of remission.
Pain-associated Disability Syndrome
magnificant: What is pain-associated disability syndrome, or PADS?
Gerard_Banez,_PhD: PADS is a term used to describe the functional impairment or disability often associated with chronic pain conditions. Patients with PADS miss school days, have limited social interactions, and do not participate in sports or other extracurricular activities. They are not as active as age peers due to their chronic pain.
Prognosis of Chronic Pain
Yello_17: If someone experiences chronic pain as a child, do they typically carry it into adulthood?
Gerard_Banez,_PhD: Course and prognosis vary for each child. Some kids who have chronic pain will continue to have pain into adulthood. For some, the pain gradually goes away and does not return. For others the pain may go away, but returns again at another time. The pain becomes an intermittent problem. It is important to get a good evaluation and treatment so that kids learn to manage the ups and downs of their pain and maintain normal activity despite their difficulties.
Differentiating Growing Pain from Chronic Pain
Jolene: What special considerations should be made when treating pain in children? Are there any typical signs you see when a child's pain complaints move from normal pain to chronic pain? How do I know that my child's pain is actually a chronic problem, and not just normal growing pains?
Gerard_Banez,_PhD: Developmental factors, both physical and psychological, need to be considered when assessing and treating pain in children. Like you say, what may look problematic may not be when considered from a developmental perspective. To better understand your child's pain, take him or her to the doctor to get an evaluation. Another unique element to treatment of childhood pain is the importance of family involvement. Family involvement during both the assessment and treatment is critical to success.
Over-the-Counter Pain Medication Management
SuperMom: Are typical over-the-counter drugs and doses o.k. for children over an extended period of time? Is it ever o.k. to increase the over-the-counter (OTC) drug dose to that of an adult if the children's doses don't seem to help enough? How do I know which OTC drugs work best? What really is the difference between Tylenol® (acetaminophen), Motrin® (ibuprofen), Aleve® (naproxen) and Advil® (ibuprofen)?
Gerard_Banez,_PhD: Typical over-the-counter drugs and doses are often used in the treatment of chronic pain in children. As far as length of use, dosing, frequency and relative benefit, these are questions to ask the doctor caring for your child. Because each child and condition is so different, medication responses vary. It will be important for you to find a doctor who is familiar with your child's problems, and one that you can trust for good medication management.
Specialized Treatment for Chronic Pediatric Pain
supermon1987: What special considerations should be made when treating pain in children?
Gerard_Banez,_PhD: Treatment options vary between medicines, procedures, psychological and behavioral therapies and physical therapy. The types of medications, procedures, psychological, behavioral therapies and physical therapy appropriate for adults may not be the most helpful for kids. Therefore, it is recommended to pediatric pain specialists.
Treatment for Reflex Sympathetic Dystrophy and Complex Regional Pain Syndrome
kbrown: What can we do about complex regional pain syndrome (CRPS) or RSD (reflex sympathetic dystrophy)?
Gerard_Banez,_PhD: Complex regional pain syndrome (CRPS) or RSD (reflex sympathetic dystrophy) can be treated with the following:
- Physical Therapy (PT) of affected body part desensitizes and restores function, with improvement in strength, endurance and range of motion)
- Drug therapy and other techniques, such as nerve blocks (injection of nerve numbing substance to block pain), TECs (tunneled epidural catheter is placed in the spinal column, providing small dose of pain killing medication during rehabilitation) and SCSs (spinal cord stimulation device sends electrical impulses to spine, affecting pain perception) can help.
- Mind-body approaches like relaxation, biofeedback and self-hypnosis can ease pain.
- Psychological treatment assists with coping and emotional responses.
- Family therapy promotes adaptive parental/familial responses.
SleepyPuppy: My daughter was recently diagnosed with reflex sympathetic dystrophy (RSD). Since then I have noticed more frequent mood swings, and I'm worried she is becoming depressed. She doesn't want to talk. What can I do to help?
Gerard_Banez,_PhD: RSD, like other chronic pain conditions, can cause the child to be very emotional and stressed. A response like your daughter's is not uncommon. Kids with RSD and other chronic pain frequently develop depression and other emotional adjustment problems secondary to their pain. Therefore, psychological services are important to help kids learn to cope and function better. I suggest that you arrange an appointment with a pediatric psychologist familiar with chronic pain issues in children your daughter's age.
Chronic Back Pain Treatment
elderson: What should you do if your child has back/low back pain? Is back pain common in young children?
Gerard_Banez,_PhD: First, go to be evaluated by your pediatrician to determine and assess the cause of the pain and appropriate treatment. Back pain is not one of the most frequently seen problems in children, but it is not uncommon.
Back pain may be associated with a number of different conditions, and, therefore, is important to be evaluated thoroughly.
TaylorTwin: What should you do if your child has back pain, especially lower back pain? Is back pain common in young children? Is it o.k. to send him to a chiropractor?
Gerard_Banez,_PhD: Although we see some back pain in adolescents and older children, it is less common to see it in young children. I suggest that you start first with your primary care provider and follow his or her recommendations. Your primary care provider may refer your child to a specialist. Get a proper evaluation done before starting treatment.
Evaluation and Treatment of Complex Chronic Pain
rasltjat: I have a 17-year-old daughter with joint hypermobility, anterior knee pain, musculoskeletal pain, headaches, gastrointestinal issues, etc. She was once a bright, energetic and athletic child. Watching her move about the house now is like watching an elderly person. She can barely walk, and getting up and down off the floor is impossible without assistance. She has gained a lot of weight in the last three years from lack of activity and eating portions that are too large. (She makes healthy food choices, but just eats too much of it.) Because of a family history of addiction issues, she does not want to take pain medication (and we support her decision). If there was only one thing I could do right away for her, without a doctor's assistance, to ease her pain—what would it be? For evaluation and assistance, which physicians or clinics should she be seeing? How do we get insurance to cover her treatment?
Gerard_Banez,_PhD: You ask difficult but important questions. Her problems are complex, and treatment will be challenging. The first thing I recommend is that you have her evaluated in an interdisciplinary clinic that specializes in chronic pain. We offer one at Cleveland Clinic Children's where each child is evaluated by a physician, psychologist, and physical or occupational therapist. From there, a multispecialty program that focuses on helping kids manage their pain and restoration of normal activity is in order. Most insurance plans will cover at least some, if not all, of her treatment.
Effects of Pediatric Chronic Pain on Lifestyle
Charliesmom: Charlie has been suffering with chronic pain since he was 10 years old. He is now 12 years old and very self conscious. Is there anything our friends and family can do to help with his pain?
Gerard_Banez,_PhD:'Encourage as much normal activity as possible, so he does not view himself entirely defined by his pain. Promote daily school attendance, social interactions with peers, participation in sports and other extracurricular activities.
It is also important maintain open and nonjudgmental lines of communication with your child. Again, pediatric psychologists and mental health professionals can play a huge role with chronic pain.
babybird213: It sounds like lifestyle changes often help reduce pain symptoms. Are there any other modifications you would recommend?
Gerard_Banez,_PhD:As I just stated in the previous question, there are good care and treatment options available for children who have chronic pain. It is vital for parents to be strong advocates for their child.
newtonm: My son is in so much pain that he is not sleeping, which has been keeping me up as well. Now I'm exhausted and having trouble getting through my daily activities. How does sleep affect chronic pain?
Gerard_Banez,_PhD: We know that sleep and chronic pain are affected in a number of ways. Many kids with chronic pain have difficulty falling asleep and staying asleep because of their pain and discomfort. As a result of their fatigue, the pain felt during the day may often feel worse and be more difficult to deal with. What we often find is that kids with chronic pain will have unusual sleep cycles where they go to bed very late and then sleep for long periods of time—and then not getting up when they are supposed to. Thus, getting up and going to school becomes difficult. We also find that kids who do not sleep well during the night are taking naps during the day which makes the cycle worse. It is important to emphasize a regular sleep-wake schedule.
newtonm: If physical activity causes my child pain, why is it important to do it anyway? Could my child get hurt?
Gerard_Banez,_PhD: First it is important to distinguish between acute pain (recent onset and directly related to injury or trauma) vs. chronic pain.
For kids who have chronic pain, physical activity is very important. In children with chronic pain, the less active they are, the more risk of disability related to the pain is seen. Increased physical activity will improve strength and endurance. For those reasons, kids will feel better. Physical activity also results in the release of brain chemicals that provide pain relief. The more active kids are doing things that they like, the less they think of their pain, the better their mood and quality of life becomes.
worriedmom: My daughter's pain is so bad on some days that she can't go to school. I know that doesn't solve anything, but our doctor can't find anything wrong. What else can I do?
Gerard_Banez,_PhD: For kids with pain problems, we encourage daily school attendance as the norm. It is important that kids maintain structure and normal activity despite their pain problems. When children miss school, they fall behind in classes, and become more socially isolated. This, in turn, may cause stressors that can make their pain worse. It is also important to seek the assistance of a pediatric psychologist or pediatric pain specialist who will help your daughter maintain age appropriate functioning.
nystrom: If you are trying to maintain normality for your child, what would you do about summer camp? What kind of information would be important for sleepover camp staff to know when dealing with your child?
Gerard_Banez,_PhD: Make sure that you have in writing from the physician; psychologist or physical therapist what types of activities should be tolerated by your child.
Encourage normal activity in your child. Provide frequent approval for maintaining activity patterns. Encourage your child to stay calm and practice relaxation where possible. Advocate camp activity attendance or stay with the group doing the activity.
To discourage pain behavior, ignore excessive complaining, pain gestures, and request for special treatment and assistance. Instruct others to do the same if necessary. Dispense medications for symptomatic relief according to directions, and follow recommended time sequence. Evaluate whether the consequence of the pain behavior is to avoid or escape from an activity or situation. If so, consider maintaining things as they are or provide an alternative (e.g., bed rest) that has little appeal to child. Avoid questioning about presence of pain or status of pain.
Critical to the success of any child experiencing pain is the acceptance and commitment to the fact that he or she can live a normal and valued life despite pain.
Acupuncture for Fibromyalgia
happydays: My son was diagnosed with fibromyalgia when he turned 13 years old. Recently, we've been hearing about success with acupuncture. Is there any proof to validate these claims?
Gerard_Banez,_PhD:Acupuncture and other complementary and alternative approaches have become increasingly popular for chronic pain. Clinically, some individuals have reported much benefit from acupuncture treatment because patients vary in their response to different treatments. It is difficult to predict how your child would respond. I would suggest that you discuss this option with your pediatrician to determine how this would work for your child.
Mirror Image Therapy and Hypnosis
UM_GoBlue: I have heard that mirror image therapy and hypnosis can be helpful in treating chronic pain? Is that true? Do you suggest it as a complement to traditional medicine?
Gerard_Banez,_PhD:Hypnosis has been around longer and, yes, there is empirical evidence (data acquired from observation) that it can be helpful as a self-management strategy for chronic pain. Mirror image therapy is relatively new, but intriguing. The material I have read speaks to its use in helping restore limb functionality in patients with CRPS. We have begun experimenting with its use clinically as one part of a more comprehensive treatment for CRPS, which includes physical and occupational therapy, behavioral health services and medical management.
Pediatric Pain Rehabilitation Programs
samcat13345: How many programs like yours at Cleveland Clinic exist?
Speaker_-_Dr__Gerard_Banez: There are only a handful of interdisciplinary pediatric pain rehabilitation programs in the United States. Most other programs are day treatment programs. The program that we offer at Cleveland Clinic is unique because it provides both an inpatient and outpatient components. We believe that the inpatient component of our program allows us to teach and instill important lifestyle habits and behaviors effectively, while the day hospital (the outpatient component) helps to facilitate a successful transition from hospital to home.
Moderator: I'm sorry to say that our time is now over. Thank you again, Dr. Banez, for taking the time to answer our questions today about children's chronic pain issues.
Gerard_Banez,_PhD: Thanks to everyone for your time and attention during this chat. Your questions were excellent, and I hope that my responses were helpful. In closing, chronic pain in children can be stressful, but there is plenty of help available to assist kids with chronic pain. With this help, kids can learn to manage their pain effectively and independently—and return to normal, high-quality lives.
To make an appointment with Gerard Banez, MD or any of the other specialists in our Pediatric Pain Rehabilitation Program, please call 216.448.6253. You can also visit us online to learn more about the Pediatric Pain Rehabilitation Program.
For More Information
On Cleveland Clinic
For information about pediatric pain and rehabilitation you may be interested to download our Guide for Pediatric Pain http://www.clevelandclinic.org/lp/pediatric_pain/index.html
On Cleveland Clinic
The Pediatric Pain Rehabilitation Program at Cleveland Clinic Children's Hospital for Rehabilitation is specifically designed for children and teens whose chronic pain interferes with their normal activities. Our number one goal is to get your child back to living his or her life as best as possible.
The Pediatric Pain Rehabilitation team at Cleveland Clinic Children's offers hope to children and families coping with Pain Associated Disability Syndrome (PADS), even after standard therapies, surgeries and medications have been exhausted. The program addresses each child's individual needs as well as those of the family. Children are examined by the appropriate pediatric specialist(s) to better understand their pain condition. Children are admitted into the program when there is agreement that an intensive, coordinated team approach is needed. Over the course of the program, our staff will communicate with you on a regular basis regarding the status of your child.
The two-part program consists of inpatient and day hospital components. The program's length is tailored to each child's needs, but children are typically seen for three weeks—two weeks as inpatients, and one week as day hospital patients. As inpatients, children and adolescents are often initially seen and treated apart from their parents. This allows them to concentrate on their care, and gives our team the chance to observe and treat them independently. Parents will have meetings with various team members and can visit with their children in the evenings.
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