to Every Parent of
A Message to Every Parent of a Child in Pain
During our many years of treating children with chronic pain, we have learned much to share with you. One of the major things we learned is that, even for children with very different chronic pain conditions, there are some common ways to reduce suffering. It constantly amazes us that children who have chronic pain, often for such long periods of time, and who have gone through so many evaluations by different sub-specialists and diagnostic tests and treatments, have conditions that seem fairly easy to understand and treat…if the right framework is used and the right questions are asked.
We have witnessed the frustration and helplessness of parents who are thwarted in their attempts to find effective treatment for their child’s pain. Sadly, every year thousands of parents are told by their child’s physician, “All the tests are normal…I can’t find a cause for the pain.” If the cause is not found, then parents worry how their child’s physician is going to help get rid of the pain. Doctors may then refer the child to a psychologist. The mental health referral is interpreted by parents as, “the doctor believes that the pain must be psychological” (meaning “not real”). Children interpret the referral as “the doctor doesn’t believe me and thinks I am faking it…that it’s all in my head.” Meanwhile, parents watch as their child endures debilitating chronic pain… day after day… and becomes even more discouraged.
We see these children and their parents every day in our pain clinics. They come from many different cultures and socioeconomic groups and are racially, ethnically, and religiously diverse. Some are highly educated, others are not; they come from single and two-parent households. Some children have severe psychological problems, while others appear to have none. They are of all ages, shapes, and sizes. Their symptoms and the degree of pain they experience differ, but what connects all these children is that the pain, regardless of its origin(s), is keeping them from living their lives.
Children with chronic pain don’t have the luxury to be children—they spend a lot of time worrying, being afraid, and sitting in doctors’ offices. None of us would want this for our child. But most parents simply don’t know what else to do. We also are struck by the degree to which parental guilt is tied up in the pain: “I work too much.” “My husband and I fight too much,” “We shouldn’t have moved out of our old neighborhood; she was so happy there.” These are sentiments heard again and again. Or parents blame themselves for how long the pain has affected their child. “I didn’t recognize the pain early enough.” “I didn’t believe her when she said she was in pain.”
Parental guilt may stem from a sense of helplessness —watching your child suffer. As parents, we blame ourselves when our child is in pain and we can’t make it go away. These guilt feelings and distress at watching our child suffer is what pushes us as parents to want to do everything possible to take the pain away. However, while it is true that what we say and do—or don’t do—can have an influence on our child’s pain, it is not the “cause” of the pain.
Pain does not just affect the child. Chronic pain moves into the home and invades the whole family—it exacerbates marital stresses and sibling rivalries. The child with chronic or recurrent pain feels out of control, and parents feel helpless. While most parents learn how to parent by using their own life experience and common sense, pain seems to defy both experience and common sense.
Guilt spreads and infects many aspects of family life, especially when a child has been suffering over a prolonged period. For example, parents who feel guilty may become overprotective, inadvertently hindering their child’s ability to feel competent and cope/overcome the pain. We say this not to give parents something else to feel guilty about but rather to point out how pervasive and destructive guilt can become. We will give you the tools to recognize and rid this unnecessary feeling and learn the best ways to help your child climb through and out of the limitations of pain.
Parents often fear that the doctors have “missed something serious.” They worry that the pain is a signal of something terribly wrong with their child and that, if not properly diagnosed and treated, can cause irreparable harm, or even death. Thus, when doctors conduct tests and say that they can’t find anything wrong, parents do not know what to do next. Should they take their child to more doctors… for more tests? Should they change doctors? Should they seek alternative therapies? If so, which ones?
Many common chronic pain problems are rooted in the nervous system ‘wiring’ and ‘signaling’ and are thus ‘electrical.’ This is why checking out the ‘plumbing’ or ‘carpentry’ has not uncovered the problem. If your child’s pain problem were evaluated by an electrical engineer, then the problem might have been identified. The problem for doctors is that we have many ways of evaluating the plumbing (e.g. gastrointestinal, gynecological, urological systems) and the carpentry (e.g. bones and muscles), but we have fewer tools to examine the electrical system in our bodies.
Most parents desperately want to know what is wrong with their child. In short, they want a diagnosis. Often a diagnosis is possible, such as complex regional pain syndrome (CRPS), or irritable bowel syndrome (IBS). Most parents are frustrated by the lack of the concrete label to explain their child’s pain. This is understandable: if there is a diagnosis, then there might be a cure, a pill that will make it all go away. However, a diagnosis is only a part of the equation. For most chronic pain conditions, there is no magic pill. By the time it has become chronic, pain has multiple factors that keep it going, add to its strength, and contribute to its impact on function.
Pain takes on baggage as it gains strength with time. To stop it, the baggage needs to be identified, disentangled, and dismantled. This job is a joint effort on the part of clinicians, your child, and you. This task cannot be carried out by the doctor alone. However, it is natural that most parents want to be able to visit the doctor and have the doctor present them with a diagnosis and then simply give their child a medicine that will work immediately and completely, have no side effects, and require no effort on the part of the child or family. Why not? That is what we all would desire! Living with a child in pain is difficult—but it need not be unbearable. We have seen amazing family triumphs in the face of severe chronic pain. Almost with- out exception, the families who flourish are those who find a way to take control of the pain instead of letting it control them. We have learned a great deal from the families who have chosen to share their lives with us, as we worked together to help their child heal.
Our new book, Pain In Children & Young Adults: The Journey Back to Normal (2016), will guide you and your child in ways to take control of the pain—regardless of the cause(s)—and, ultimately, help your child to climb out of pain and get back to a normal life. It summarizes the philosophy and technique for our practice in the UCLA Pediatric Pain Program and Whole Child LA clinics.