By Brenda C. McClain, MD, DAPBM It can be difficult caring for a child with daily or recurrent pain. You may ask, “Do I give the problem too little attention?” Do you tell your child that everything will be all right when deep down you have your doubts and questions have not been answered to your satisfaction? Or, do you find that you are giving too much attention to the situation? Have you stopped routine activities and are you going from doctor to doctor looking for firm results?
If it is a disorder where there are recurrent bouts of pain as in sickle cell disease or recurrent abdominal pain, then you may feel like a prisoner to the disorder, never knowing when it will strike again. If the pain is constant in duration, then you may feel frustrated in your search to pain resolution. How can you make the pain stop so you can “get your child’s life back”? As your child’s caregiver, it is important to be informed about the disorder and its treatment. Make sure you are armed with the correct information. In this era of web education, you must be sure of the validity of the source of information. Many sites are by pain sufferers who may give a less than objective view of the disorder or syndrome and can make you feel distraught and hopeless. The National Pain Foundation’s information is evidence-based and adheres to current philosophy of care.
The following are common questions that parents have asked our pediatric pain experts. We hope that this Q&A section is helpful to you and your child.
Questions related to diagnosis and management
Q: When should I ask my doctor for a referral to a pain physician?
A: Simple, short-lived pain is easily handled by your pediatrician. If the pain is severe and not responding well to medications prescribed by your pediatrician, or if the pain persists or recurs for several weeks to months and is not well controlled, then referral to a pain specialist is in order for such complex pain disorders.
Q: Why is a psychologist often involved in pediatric pain clinic care?
A: Pediatric pain management is a multidisciplinary approach. If a child has chronic pain, then it does affect every aspect of the child’s life, including their self-esteem, socialization and general quality of life. A psychologist can help determine a child’s strengths and weaknesses for coping with the pain and can offer strategies to improve coping that can lessen pain, improve self-esteem and enhance quality of life.
Q: My child has had multiple tests and x-rays yet they can find nothing wrong. Is my child faking the pain? What should I do?
A: Chronic pain syndromes are a collection of certain symptoms and often cannot be seen on lab tests or X-rays. A pain expert has studied pain syndromes and will more readily recognize the grouping of symptoms as a particular syndrome. Children as young as three years of age can describe their pain. They will use terms that are appropriate for their age. Watch for pain behavior such as holding or guarding of the affected area or avoidance of activities and positions that cause pain.
You should believe your child — it is their pain experience. A child should never have to validate their pain. Statements such as “s/he doesn’t look like they’re in pain to me” are not helpful and undermine treatment.
Q: The doctors have prescribed what I feel are strong medicines. I prefer herbal therapies, what should I do?
A: Generally, the medicines prescribed have evidence of some success with a particular pain problem. Herbal remedies may have some benefit but are often less effective and thus can be frustrating to your child when relief is inadequate. If you should choose to use both herbal remedies and medications, inform your pain physician. Interactions can occur between certain herbs and medications.
For example, feverfew, an herb for migraine headaches should not be taken with triptans such as Imitrex because extreme high blood pressure may result. Remember, some herbs are potent and are not benign just because they are natural. Reported adverse reactions to the herb Ephedra have included insomnia, nervousness, tremor, headaches, hypertension, seizures, arrhythmias, heart attack, stroke and death.
Q: How long should they take the medicines or herbs?
A: Treatment may be prolonged for weeks to many months. With prolonged use, it is important to make sure that your pain physician checks your child’s laboratory results periodically for any changes. Your physician may recommend a “holiday” from a medication to allow the body’s function to return to normal.
Q: I don’t want my child to become an addict. Can I give the medicines sparingly?
A: Drug addiction is no more likely to occur for your child than it would in the general population. Physical dependence can occur when a medication is used for a prolonged period and the body reacts if the drug is abruptly stopped, but this is not addiction. It is a normal bodily response.
Physical dependence occurs with other medications as well. For example, if you are taking certain high blood pressure medications and you suddenly stop taking them, your blood pressure rapidly increases. You wouldn’t call this addiction to blood pressure medication! It is the same with opioid analgesics (pain relievers). Therefore, if the child has been prescribed opioids for several weeks or months and the pain has stopped, it is necessary to slowly decrease the dose. An attempt to avoid physical dependence by using medicines sparingly may delay recovery since pain control will likely be inadequate and may decrease your child’s ability to play and engage in normal activities. Medications prescribed around the clock should be given as ordered.
Questions related to education and socialization
Q: When should I send my child to school with pain?
A: We encourage parents and children to maintain their regular activities as long as there is not any threat of physical harm. If your child stays home but plays video games without significant difficulty, then it is suggested that they attend school. You may start with half-day then progress to full-day attendance.
Q: It is difficult for me to pick up my child midday if the pain gets worse. Is home schooling better?
A: Written permission to have rest periods at the school nurse’s office and/or to take medications under the school nurse’s supervision can often stop painful exacerbations such that the child can attend school. Home schooling only for the sake of avoiding your child’s pain problem is not recommended.
Q: My family’s schedule is totally out of control with all the doctors’ appointments and shift in chores. I have not been able to give attention to my other children and duties. What can I do to return balance to my home?
A: Family meetings to discuss everyone’s concerns can be helpful. Prioritize each family member’s concerns and ask for everyone’s help. The child who is experiencing pain should participate as much as possible as well. You should not let the pain excuse the child from all chores or responsibilities. Alter the tasks as needed but don’t burden siblings with their brother’s or sister’s chores. An exchange of chores may be necessary. This lessens ill feelings between siblings when it comes to sharing family responsibilities.
Continue family activities as much as possible. If going on an outing, give pain medications as scheduled or just before leaving home and take medications with you in case additional or upcoming scheduled doses are required. Remember to stay within the recommended prescribed dosing. Bring along accessories that have proven helpful such as pillows, warm packs or ice packs. Participating in activities can serve as a great distraction from pain for the child and the group interaction can help preserve the family unit.
Questions related to outcomes
Q: When will my child get better?
A: While the exact duration of pain cannot be predicted, the multidisciplinary approach to chronic pain has been shown to improve outcomes and is highly advised for care of complex pain problems. Long-term studies in pediatric pain are few but those that do exist support current beliefs that most childhood pain does not last a lifetime. Poorly controlled acute pain can become chronic pain, however, so it is important to treat pain promptly and adequately. Studies in infants show that when pain is poorly controlled (eg, a circumcision without injecting local anesthetics to numb the area), subsequent painful experiences, such as vaccinations, are less well tolerated many months thereafter.
According to Dr. r. Pascuzzi of Iowa University, “One-third of all children suffering from headaches eventually grow out of them. The news is even better for children with migraines: 50% of these headaches spontaneously resolve when children become teens, and another 25% disappear in the early adult years.” Similar good news exists for recurrent abdominal pain sufferers. For the neuropathic pain, such as reflex sympathetic dystrophy (RSD) also known as complex regional pain syndrome, type I (CRPS I), about half will have some residual pain after a year of conservative treatment. A newer treatment of 96 hours of regional blockade technique shows promise for pain resolution in RSD/CRPS I. The most important point is to develop a clear plan of care goals and expectations in collaboration with your pain physician. Open communication and education are keys to successful pain management. For more information about pain in children, visit the pediatric pain areas on the National Pain Foundation web site:
The American Academy of Pediatrics’ web site has additional pain resources and guidelines available at:
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