Children Living With Chronic Pain

Children "everywhere" are living with chronic pain, The Washington Post reports in today's article, "Pain on a Smaller Scale." Doctors are often uncertain about what causes the pain in kids -- and what relieves it -- and treatment is often delayed.

Ken Goldschneider, head of pain management at Children's Hospital Medical Center in Cincinnati, and Susmita Kashikar-Zuck, associate professor of pediatrics at the Cincinnati Children's Hospital Medical Center, were online Tuesday, March 15, at 11 a.m. ET to discuss the support and treatment for children living with chronic pain.

The transcript follows.

Editor's Note: Washingtonpost.com moderators retain editorial control over Live Online discussions and choose the most relevant questions for guests and hosts; guests and hosts can decline to answer questions.

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washingtonpost.com: Thank you for joining us today to discuss the treatment and support for children living with chronic pain. What are the reasons for children experiencing chronic pain?

Goldschneider and Kashikar-Zuck: Thank you for having us. Dr. Kashikar-Zuck and I (Dr. Goldschneider) are pleased to join your discussion forum. We see a large number of types of pain that affects the kids we see here at the Cincinnati Children's Pain Clinic. Belly pain is the most common reason for referral to our clinic and is caused by a wide variety of things. It is frustrating that a good number of kids have no "medical reason" for their pain. Families and the kids go through lots of testing, and often do not find an "answer". This is what commonly leads people to not believe that a child has pain, since there is no Pain-O-Meter to test for pain. That does not mean a child does not hurt; they do if they say they do. Pain is personal, and no one outside can feel what the child feels. It is the philosophy of our clinic to take all reports of pain seriously, and to believe what the child says. Other sources of pain include back pain, headaches, favourings, limb pain, neuropathic pain (pain from nerves), and a host of other things. Sometimes the "cause" is clear, and at other times it is not so clear. Regardless of the origin, there area number of treatments that can be helpful.

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Boston, Mass.: I was curious if there were any personal monitoring devices that might record the level of pain that a child is dealing with, or if there were monitors that might record sleeping habits, as I understand that disturbed sleep is one of the critical side-effects of chronic pain, a very viscous cycle.

Goldschneider and Kashikar-Zuck: Very interesting question. Pain is what the person says it is. There is no way right now to measure pain as one might measure blood pressure or pulse. That sometimes makes it hard for the patient to make themselves believed, when there is nothing obviously broken or cut. Using a notebook or PDA to keep a personal pain diary is an excellent way to keep track of both pain and sleep patterns. You doctor may be able to help you use the pattern to come up with a useful plan of action to help. Actigraphs measure physical activity levels during sleep, and are sensitive to movement during sleep, and are occassionally used to measure restless activity during sleep. You are right, disturbed sleep is a huge problem for many pain patients. It can result from the pain, but also can make it harder to deal with the pain.

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Bethesda, Md.: My 16-month-old grandson cannot put his feet flat down because he appears to have a lot of discomfort and ultra sensitivity on the bottom of his feet -- consequently he will stand on his toes but does not want to walk, have you heard of this before and what should be done?
Thank you.

Goldschneider and Kashikar-Zuck: This is Dr. Goldschneider: Thanks for your question. There are a variety of reasons your grandson may have trouble walking. I would suggest a visit to his pediatrician, who can review the medical history and perform a physical exam. He or she may refer you to a child neurologist, orthopedic surgeon or physical therapist for further evaluation.

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Arlington, Va.: What about the psychological aspect of pain with children? Does the fear of the pain coming on make the pain worse? Have studies been done to show how chronic pain affects these children mentally vs. how it affects adults?

Goldschneider and Kashikar-Zuck: This is Susmita. Thanks for the great question. As a matter of fact there is a lot of research going on about how pain and anxiety are associated. Both with children and adults, fear of pain is often related to a fear of movement and physical activity. Sometimes this can prevent them from taking part in physical therapy or other treatments that may hurt a bit more initially, but eventually treat the pain very effectively. We often also work with children and families, helping them cope with anxiety about getting back into activities, so that they can function at their best.

This is Dr. Goldschneider: You question makes an important point. Psychological therapy is not "head-shrinking". It is an important and useful treatment for chronic pain. It is essential to treat the kids a whole people, not just hurting stomachs or bad backs. Psychological treatment does NOT imply that anyone thinks the child is crazy or faking their pain.

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Washington, D.C.: Is Lidoderm safe for pediatric patients, and what types of pain is this topical patch appropriate for, beyond its approved indication for shingles?

Goldschneider and Kashikar-Zuck: This is Dr. Goldschneider: Lidoderm has not been approved for use in children for any purpose. On the other hand, many treatments have not, and are used "off-label." However, we have not used the patch enough to advise.

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Washington, D.C.: I was a child with chronic pain. I was diagnosed with Sickle Cell Disease in 1978. There were times while growing up that family members said that I was faking, unfortunately I wasn't. Children's Hospital was always the place to go for help, and I wish I could return.

Goldschneider and Kashikar-Zuck: This is Dr. Goldschneider: I very much appreciate your situation. If there are pain clinics in your area, you might explore what they have to offer. Depending on your relationship with your hematologist, they may have suggestions for a clinic that has experience with Sickle Cell Disease. What others in the audience need to know, is that Sickle Cell Disease is a very painful entity, and the pain flare-ups can be both frequent and severe. It is not unusual for a patient to need high dose narcotics to get by during a pain flare, but given what Sickle Cell Disease can do to a body, that is no surprise. I hope you are able to find a helpful resource in your area. Best of luck and health.

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Columbia, Md.: What steps should a parent take when a child first starts complaining of pain? My daughter complains of pain frequently in her joints, stomach pain, and headaches. She has a hard timequantifyingg the severity -- it either doesn't hurt or it is severe. Is there a way to take a coordinated approach to finding help?

Goldschneider and Kashikar-Zuck: This is both us: Assessing what is going on is a common problem that our families report to us. Your daughter's complaints could result from a large number of potential causes. So we will make a general suggestion. First, listen to her carefully. It sometimes takes a few conversations to get the details right (although sometimes that never happens, so don't get down on yourself if you can't figure it all out). You might keep a diary on the calendar for a while, to see if there is a pattern. For instance she may complain of pain before tests, on Mondays mornings, after eating a certain food, or after doing a particular activity. If she seems ill, develops a fever, is losing weight, then a trip to the pediatrician needs to happen sooner rather than later. Otherwise, take the information you have collected to your pediatrician, and go from there. You are now aware that pain clinics exist for kids, so if the problem is beyond what your pediatrician feels able to treat, you can ask about a referral. That may not be easy, as you saw in the article, there are fewer than 30 clinics serving the whole country.

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Washington, D.C.: This was a fascinating article to me. The same experiences can be applied to adults too and can sometimes be even more frustrating because as an adult, I expect that my doctor will believe that I have real pain. However, after a year of chronic pain that can't be attributed to anything specific, frustration and irritability is impeding my ability to have a normal life. How do children cope with this pain? Do doctors just try to manage their pain without taking into consideration how much chronic pain affects you mentally?

Goldschneider and Kashikar-Zuck: This is Susmita: You are absolutely right. Pain affects children and adults both physically and mentally. We are trying to increase awareness among the public and medical professionals that a person should be treated as a whole. Therefore a careful assessment of both medical and psychological aspects should be done, and taken into consideration when planning treatment.

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Chicago, Ill.: I am a pediatric nurse practitioner who specializes in pediatric pain management. I find the area of chronic pain interesting but also draining, as it is for the families. I think a big part of pain management is managing patient and family expectations. In many cases we may never find a physical reason for the pain despite exhaustive testing, we may never get rid of the pain completely, and the pain may have some psychological origins. I find kids with physical origins for the pain and positive attitudes show fewer side effects to the meds and tend to move much more quickly toward recovery than kids with a strong psychological component. Would you agree?

Goldschneider and Kashikar-Zuck: This is both of us. Several people have written in about the emotional and psychological aspects of pain, so we will address them here, as we are running shy of time.

A team is important for managing chronic pain. You are quite right, the emotional burden these patients and families carry can be very heavy. At times, it can be draining for thepractitionerss as well, given that we are all human and have feelings, sympathy and want very much to help. As we have mentioned, the patients are whole people, and parts of afamilyy, all of whom can be affected by the pain situation.

In our clinic, we have Susmita and me (Pain Psychology, and Pain Medicine) as well as 4 nurse practitioners, a physical therapist and a biofeedback technician. Working as a team, we are able to help better than if we each tried alone.

One major problem, is the health care system splits the world into medical and mental health camps. As many of us have seen, payment and insurance coverage for mental health services are often poor or non-existent. This is a national situation that prevents many children from getting the best pain care.

Be careful, though. Labelling the pain as "psychological" or "psychosomatic" tells the patients that it is not a serious as "real" or "organic" pain. If a patient is suffering from their pain, it is irrelevant whether it has a measurable cause or not. It needs to be treated just the same.

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Belgrade, Maine: Hello -- My 13-year-old daughter will be having her second round of leg-lengthening surgery in a few months. (Her first was at age eight.) She'll be in a fixator for eight months, with pretty much constant pain, especially the first three months where the actual lengthening is occurring. Do you have any suggestions for how to help her deal with this, beyond the strong pain meds (months of oxycodone) that we relied on last time?

Goldschneider and Kashikar-Zuck: This is both of us: I would not be shy with the pain meds, in your situation. However, your child may benefit from a variety of psychological techniques that can help her relax and be distracted from the pain and irritation of having the fixator in place. Ask your pediatrician for a referral to a pediatric psychologist, who has experience with pain management. Ask your anesthesiologist about an epidural or nerve block at the time of surgery; that may help reduce the amount of pain she starts off with.

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Goldschneider and Kashikar-Zuck: From Susmita and me: Thank you to everyone who sent in such thoughtful questions. We missed a few due to time limits, so apologies to any we did not get to. Chronic pain is a more common problem for children than most people realize. There are many treatments that can help. Be aware that medication and injection therapies have a not-so-hot track record for chronic pain in kids, when done alone. The best treatment plans take care of the whole child and family addressing the physical, psychological, and social aspects of chronic pain. The best to all and your families, Dr. Kenneth Goldschneider and Dr. Susmita Kashikar-Zuck.

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