Chapter One
Understanding Your Child's Pain

As a parent or grandparent, it is unimaginably difficult to watch a child suffer, to want to relieve the pain but not know where to turn or what approach to use. Your frustration and anger, anxiety and fear are understandable. Yet these very human emotions, which are displays of your love and concern, can get in the way of the very goal you wish to achieve: to relieve your child's pain and suffering. While health-care practitioners are usually successful at relieving acute pain -- a burst appendix, a broken arm, an abscessed tooth -- the same can't be said about chronic pain. If your child experiences chronic pain, you're probably feeling all the emotions we just mentioned.

The good news is, you can channel those emotions into positive, effective actions that can help you help your child. That's what this book is about: showing you how you can encourage your child to live his or her life to the fullest, with as little pain and discomfort as possible.

My decades of experience in working with children who live with chronic pain have shown me that even with the worst cases of childhood pain, we can still make a positive difference in the lives of these children and help make their childhood experience a more positive one. To make that difference, there are three main things you, as parents, need to do:

• understand the unique nature of childhood pain
  
  
• know where and how to get competent help for your child's pain
  
  
• have a comprehensive understanding of all the treatment options available to you
  

I firmly believe that in order for people to overcome an obstacle or beat an opponent, it's necessary to understand what they are up against. Childhood pain can be a formidable opponent, but armed with the proper tools, you can learn how to combat it and teach your child to have some control over it. In this chapter and the next, we explore the features of childhood pain so you will have a clear understanding of how pain works in young people. Be prepared to put aside some or all of your preconceived notions about childhood pain, and enter the world of childhood once again.

How Common Is Childhood Pain?

It's a fact of life: children get hurt, and they experience pain. They run through the house, jump off the furniture, tumble down stairs, fall off their bikes, and generally barrel through life. Along the way, they get cuts and bruises, sprains and strains, and sometimes a broken bone or worse. They also tend to experience bouts of minor medical problems, such as colds, flu, and earaches. In fact, during a one-month period, a normal, healthy child experiences about four acute painful events. Acute means the pain is short-lived and usually can be identified and described easily.

Thus, if your ten-year-old daughter has a tooth pulled, she can expect to feel throbbing pain after the Novocain wears off and will likely need to take ibuprofen for a day or two until the pain subsides. If your three-year-old son has his tonsils removed, he will experience postoperative pain for several days, which will be treated with painkillers and plenty of ice cream. And when your eight-year-old takes a bad fall from his skateboard and breaks his arm, the arm will likely heal nicely once it's set in a cast, and your child will quickly go about his usual activities, with some limitations for a while, but also proudly displaying his "badge of honor."

Children can also experience a more persistent or long-term type of pain. In fact, for an estimated 10 million children, pain is chronic or recurrent, which means it lasts for extended periods of time or recurs at regular or irregular intervals. (For the sake of simplicity, we will use the term "chronic pain" to describe both chronic and recurrent pain unless "recurrent" is specifically meant.) In otherwise healthy children, and in girls more often than in boys, recurring headache or migraine, abdominal pain, or limb pain can occur several times a week. The pain usually is not associated with a disease or other medical condition, but it is very real and can be debilitating. Other types of chronic pain in children can include facial pain, back pain, cancer pain, fibromyalgia, and others, which we discuss in depth in Chapter 2. (See "Pain in a Nutshell.")

Regardless of the source of or reason for chronic pain, it usually has a dramatic impact on children's lives and can cause them to miss school, sports events, family activities, and play time with friends. It has negative effects on their relationship with their parents, siblings, and friends, and can cause them to become depressed, withdrawn, fearful, and anxious.

In short, chronic pain can rob a child of her childhood and have a permanent effect on how she deals with pain as an adult. It can change a child's life if the pain and the child's relationship with it are not handled effectively. The good news for you as a parent is that you and your child can learn how to manage and treat pain in ways that will result in a more fulfilling and comfortable life.

What's Unique About Childhood Pain

Humans are complex beings, and the experience of pain is not the same for people of all ages. Researchers now accept that young people -- from the fetal stage through adolescence -- experience pain differently than do adults. There are several reasons why a child's pain is different from and in some ways unique when compared with adult pain. Understanding these differences and special features can help you better understand your child's pain and thus make you better able to manage it and help your child. Let's look at those differences.

Your son or daughter may be the spitting image of you, yet it's important to remember that children are not little adults and they are not you in a pint-sized version. That means their experiences with pain aren't miniature either, but they are different. To help you understand why your young children react to painful experiences the way they do, let's look at what's unique about childhood pain and some of the factors that contribute to how they experience and respond to pain.

Kids Experience and Express Pain Differently Than Adults

As adults, we are at an advantage when it comes to our relationship with pain. For one thing, we have a working definition -- "unpleasant sensory and emotional experience associated with actual or potential tissue damage or described in terms of such damage," according to the International Association for the Study of Pain -- which gives us an intellectual understanding of pain. Such a definition means nothing to young children, although older teens may appreciate its meaning.

As adults, we have past experiences with pain that we can use as points of reference; for example, we know that a paper cut is just a minor irritation, while slicing a finger down to the bone is much more serious, and we know how to react appropriately in each case. Yet young children may cry equally loudly if these situations were to happen to them.

As adults we also know that pain can usually be treated successfully with drugs or an alternative approach. That is, because we have a vast store of reference, we know there is an end in sight. Young children, however, only know the moment, and imagine the pain will go on forever. The younger the child, the smaller his or her frame of reference, and so the fear of endless pain is more real.

So if a three-year-old cuts her finger and she is hurting, she doesn't have the capacity to understand that the pain is temporary, that the pain from the cut will fade quickly, and that in ten minutes she will likely be back playing again. She only knows that it hurts NOW, and her blood-curdling screams are not indicative of the seriousness of the injury, just how serious it is to her. Perhaps you can remember a painful injury or incident you had as a child and how you felt. If you can't, be assured that your perspective of pain was different then than it is now.

The bottom line is, children experience and express pain differently than adults because they have an entirely different frame of reference. One of the most obvious -- and most significant -- factors in that frame of reference is age.

Age: Preschool. Children's attitudes toward, perceptions of, and responses to pain change as they get older. Each and every time children experience discomfort or pain, they add the memory of the event to their databank of information. This doesn't mean they always understand the information they are gathering, but it is still added to the mix. These memories are important because they have a great impact on how children cope with pain for the rest of their lives.

Beginning around two years of age, children can verbalize their experiences with pain, often using words like "boo-boo" or "ouchie." (Before age two, parents and doctors must rely solely on how children look, sound, and react to get an idea of how serious pain is. We talk about how we measure pain in Chapter 2 under "How Childhood Pain Is Rated.")

At this age and up to about age six, children are learning about pain and what it means. Generally they are fascinated with any visible evidence of pain, such as scars, black and blue marks, scabs, and stitches. All wounds, big and small, are significant to them, yet it is the accumulated knowledge they gather from these types of events that will help them describe and quantify pain as they grow older. You'll see why this is important when, later in this chapter, we talk about how we measure pain in children.

Preschoolers are also learning about cause and effect. When a three-year-old child rides his tricycle over a bump, falls off the bike, and hits his head (while wearing a helmet, of course!), he will likely associate the pain with hitting his head and not the fact that he hit an obstacle that caused the fall. However, he is beginning to find reasons for his pain. While children can grasp the cause and effect associated with acute pain (if you play with matches, you can get burned; if you run too fast you can fall and get hurt; if you fall out of a tree you can break your leg), it can be a very difficult concept when it comes to chronic pain. We talk about how to talk to your child about chronic pain in Chapter 8.

Preschoolers also think that their parents, grandparents, and other authority figures know exactly what hurts and how much, and that they can automatically fix it. This may be true for a bruise, a smashed finger, or a cut on the knee. These acute, painful experiences are easy to see and the pain they cause usually fades quickly on its own. However, the pain may disappear even faster when mommy says "Let mommy kiss it and make it better" and offers a cookie or the promise of a video.

rBut once again, when the pain is chronic, and especially invisible (e.g., a migraine, abdominal pain, chronic ear pain), preschool children cannot understand what's happening. They want to know: "Why can't mommy make it go away with kisses and cookies?" "Why can't I see my boo-boo?" (See Chapter 8, in the section "Why Do I Hurt? Talking to Your Child about Pain," for help with your child's questions about pain.)

Age: Elementary School. Beginning around age seven, children are better able to both verbalize their feelings of pain and understand why pain happens. They may also realize that chronic pain may be associated with something serious, and this may frighten them, cause undue stress, and thus ultimately make their pain worse. (We talk about pain, stress, and how parents can help their child deal with these issues in Chapter 7.)

Elementary school-age children are also capable of assigning emotions and feelings to their pain. Take nine-year-old Christopher, for example. His mother brought him into the clinic because he had been experiencing recurring headaches. When asked if he could tell me where his head hurt, he pointed to the right side of his head with a circular motion. "It's like somebody is inside my head with a boom box," he said. When asked how getting these headaches affected his life, he said, "I get real mad because I can't play basketball with my friends. It hurts too bad. And sometimes I throw up. I wish they'd stop." But when I addressed these same questions to four-year-old Paulina, she hid her face in her mother's shirt and wouldn't look at me.

Age: Teen Years. Children twelve years and older have had more opportunities to experience different types and levels of pain, so they typically can better explain how they feel. They also usually have very emotional responses to pain. One reason for this emotional response is that adolescence is inherently a highly charged time of life. Chronic pain is an intrusion into their lives: their quest for independence and a break from parental control, and their desire to belong to a group and to be accepted. Teenagers who experience chronic pain feel they have no control during a time when control is so vitally important to them.

These issues can be extremely stressful for teenagers. Stress can not only compound their pain but also contribute to depression, which is a common occurrence among adolescents. Stress and depression are addressed in more depth in Chapter 7.

How Parents and Other Adults Respond.  Parents play a critical and unique role in the relief, or continuance, of their child's pain. For one thing, children turn to their parents for guidance on how to react to a painful experience. Parents who dismiss painful events by saying things like "It's nothing to worry about," or "Don't be such a baby," or "Nothing's wrong with you" may be sending the message that the pain isn't real or important or that the parent doesn't believe the child.

When children have acute pain, it's common for parents to nurture them until the hurt heals. When nine-year-old Stephen had the flu, his mother let him lie on the couch and watch videos while she brought him juice and soup. When eleven-year-old Charisa broke her leg, she got the "royal treatment" from her parents and sisters for about a week until she was able to master her walking cast and crutches. The entire time eight-year-old Joel had strep throat, he didn't have to do his chores, and his mother bought him all his favorite desserts. You can probably add some spoiling routines to this list. Face it, we like to pamper our kids when they don't feel well. This is a very appropriate response to an acute, short-lived injury or illness, but it is often counterproductive and maladaptive when chronic pain is involved.

If you spoil your child who has chronic pain, you may be sentencing him or her to a life on the couch or on the sidelines. Instead of the message being "I care about you so I'm going to do everything for you," the message is "You're sick and you can't do anything for yourself," or "You're not okay," or "Give up."

Children who live with chronic pain need caring and supportive role models, and most often they turn to their parents. In this book we are going to show you how to acquire and provide that support.

Gender. For a variety of possible reasons, boys and girls may differ in how they perceive pain, express it, and cope with it. Overall, girls tend to rate more procedures (e.g., having a tooth pulled, setting a fractured bone) as painful than do boys. Girls also tend to be more anxious, nervous, or fearful about pain, while boys are usually angry. At least one reason for these differences is cultural. Generally, when girls experience pain they are encouraged to take medication, to lie down, or to relax. Boys, however, are usually expected to "tough it out," to "take it like a man," even though the level of pain a girl and a boy may be experiencing is the same. Thus the messages girls and boys get from authority figures -- parents, grandparents, teachers, coaches -- regarding pain as they grow up impacts how they perceive, express, and manage pain.

Attitude. Children are attuned to how their parents and other authority figures feel about their health conditions. If you've been taking your child to different doctors or you've been trying different medications and the results haven't been satisfactory, it's important that you don't reflect a defeated or negative attitude. If you, the child's authority figure, feel helpless and hopeless, how else can you expect your child to feel? One thing that can help your attitude is to understand as much as you can about your child's pain and any of the ways it can be treated. That's what this book is here to do.

Sense of Control. When you feel out of control or you feel as though the outcome of a situation is out of your hands, it's natural to feel stressed, anxious, afraid, and helpless. If you feel this way, can you imagine how children feel under similar circumstances? But there are things we can do to reduce the levels of these feelings and, in some cases, also reduce the amount of pain children experience. It all boils down to giving children some control over or some say in the painful situation.

Naturally, the amount of control any child can have over a painful event depends on several factors, including age, the seriousness of the condition or event, and what the treatment or procedure is. Yet even the simplest activity may prove helpful. When thirteen-year-old Bryan began to experience frequent headaches and nausea, he was very frustrated about missing soccer games after school and often not being able to listen to music with his friends. His sense of helplessness and frustration was only making his head pain worse. He told his father that "I feel like the headaches control me."

Bryan had medication he could take when the headaches were bad, but he needed something that gave him more hands-on control. To help reduce his feeling of helplessness, Bryan was shown some simple techniques he could use whenever he felt stressed or when a headache was coming on. Bryan found that knowing which pressure points to massage and how to do deep breathing exercises and progressive relaxation helped him feel more in control of his head pain. (More about these and other techniques in Chapters 4 and 5.)

Kids Experience a Greater Diversity of Chronic Pain than Adults

Generally, chronic pain in adults most commonly falls into one of several categories: back pain (the number one complaint by far in any pain clinic), migraine, myofascial pain (for example, fibromyalgia), and joint pain (most frequently osteoarthritis). Chronic pain in children, however, tends to fall into different classes. On the one hand are those chronic pain syndromes that are functional, meaning they are not associated with any tissue or organic injury. These include headache, migraine, recurrent abdominal pain (which typically includes cyclic vomiting and irritable bowel syndrome), limb pain (which includes complex regional pain syndrome type 1), and fibromyalgia.

On the other hand are chronic and recurrent pain syndromes associated with many diseases, such as juvenile rheumatoid arthritis and other collagen vascular diseases (which are more common in children than they are in adults), sickle cell anemia, human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS), and cystic fibrosis. We discuss all of these chronic pain conditions in Chapter 2.

Kids Respond Differently to Mind/Body Therapy and Drugs

One hundred percent of the children who are treated at our pain clinic get one or more forms of complementary treatment at least once, and most of them continue with these therapies. Why? There are several reasons, but primarily because they are very effective in children. As you'll read about later in the chapters on "Using the Power of the Mind" and "Tapping into the Body's Healing Powers," children are often more accepting of alternative or complementary therapies than adults, as they have few if any preconceived ideas about these practices. They also typically have active imaginations, which makes working with methods such as visualization/guided imagery, self-hypnosis, and play therapy not only beneficial but fun as well.

When it comes to medications, children respond differently to drugs than older individuals. We discuss this issue in more depth in Chapter 6, "When Medications are Needed," but for now let's remember that children are not miniature adults: you can't just give them a lesser dose of a drug and expect it to work the same way it does in an adult. Children may have a different response not only in terms of how much relief they get from the drug, but also in the type and severity of side effects from the medications.

Treating Childhood Pain: What's the Goal?

When it comes to treating pain in children, the approach and goals differ depending on whether we are treating acute or chronic pain. In acute pain, the goal is to eliminate or significantly reduce the pain, which we do more often with drugs. Because the pain associated with an acute condition is only temporary, the use of drugs is typically not something about which parents should worry. In the majority of cases, children need to take a few doses, or perhaps even a week or two of medication, after which the pain will be gone and the treatment will be finished. This is how we usually treat, for example, an earache, sore throat, headache, and muscle pain from the flu.

When you're treating chronic pain, treatment is typically administered over months, and for some children, years or a lifetime. Whenever possible, I keep use of medication to a minimum to help avoid side effects and drug tolerance. Fortunately, children generally respond very well to mind-body techniques, which means in many cases minimal or no drugs are needed for pain management.

In children who have chronic pain, we want to eliminate or minimize the pain, yet this is not always easy and it isn't always the goal. In children who can expect to experience a lifetime of pain, the implication is that they will need to take medications for the rest of their lives. Physiologically and financially, this may not be the best approach to take. Drug tolerance (reaching a point where higher and higher doses are needed to achieve the same results) and side effects can both be significant problems when treating chronic pain.

That's why when I evaluate a child for treatment, I am mindful of the goals of the management of chronic pain, which are to restore or maximize the child's level of functioning and to reintegrate the child into his or her normal life as much as possible. And while I don't necessarily shy away from the use of pharmaceuticals to manage chronic pain, it is not the first tool I pull out of my treatment box. Often the use of medications impairs children's functioning by making them sleepy, unable to concentrate, or sluggish. That's why I am thankful there are many other pain management approaches we can use to achieve our goals, and that children typically respond to them very well. We talk about those approaches in Chapters 4-7 in Part 2.

Why It's Important to Treat Childhood Pain

The obvious response to this statement is, "Of course, so my child won't suffer; so he or she can be as happy as possible and live as painless a life as possible," and that is certainly the most important reason. Yet there is another reason as well, one about which researchers are learning more and more. That is, that chronic pain experienced during childhood may predispose individuals to more debilitating pain later in life; in other words, pain begets pain. This is because chronic pain changes the way the central nervous system processes and transmits pain nerve signals, making it more sensitive to stimulation over time. If we can identify and successfully treat childhood pain, then we will be able to reduce or even eliminate problems later in childhood and adulthood.

In fact, researchers suspect that when premature infants experience recurring, painful procedures, as are sometimes necessary to ensure the survival of such infants, the procedures may damage their nerve cells. Thus hyperstimulation of the nerves may result in long-term consequences to the nervous system. We are not yet certain how significant those consequences may be. This question is a subject of a Food and Drug Administration and National Institutes of Health task force that is looking at pain control in newborns.

Bottom Line

While adults have a more pragmatic approach to pain, a child's pain is layered: there's the biological/physical layer, and there's the very influential layer composed of emotions, thoughts, physical skills, behaviors, and cognitive processing abilities. The composition of this other layer has a significant impact on how a child experiences and expresses pain. Parents need to view their child's pain with different eyes -- with the eyes of the child they once were -- and so hopefully will better understand and be better able to help their child meet the challenge.

In the next chapter I will take you on a more intimate trip into the world of childhood chronic pain. As a parent you are already somewhat familiar with the road you've been traveling, but it's my hope to make the journey a little easier by sharing what health-care practitioners, parents, and children with chronic pain know about the challenges.

Copyright © 2005 by Elliot J. Krane and Lynn Sonberg