The Clinical Guide to Supportive and Palliative Care for HIV/AIDS

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 12: The Care of Children and AdolescentsInfants and young children are dependent on adult caregivers for their activities of daily living.These patients are too young to use the bathroom independently, change their clothes, or prepareand eat meals. Therefore the presence and severity of symptoms that require adult attentioncan26bepicasascertained by asking a parenting adult. This person certainly will know whether ayoung child is experiencing vomiting, diarrhea, infrequent stools, decreased appetite, decreasedactivity, disturbed sleep, or fussy behavior.As discussed above, behavioral observations regarding changes in appetite, activity, sleep, andmood do not necessarily indicate the presence of a specific symptom. For instance, pain ornausea could cause the same spectrum of behaviors; identifying the correct symptom is necessaryfor effective symptom management.Providers need to ask older children directly about their symptoms, in addition to asking adultcaregivers for their observations. Children may not recognize or accurately use “medical” descriptors.Nonetheless, their reports are critical pieces of symptom assessment. Nausea is difficultto describe or explain. Constipation may be missed because children do not keep track oftheir bowel movements. Fatigue may be misinterpreted by adults as laziness. Anxiety, fear, anddepression can cause behaviors that adults could label as oppositional or “limit-testing” withoutexploring their underlying etiology.Treating SymptomsAn effective symptom management plan will include both pharmacologic and non-pharmacologicmodalities. Pharmacologic treatment of infants, children, and adolescents entails challengesuncommon in adult medicine. The safety and efficacy of many common medications havenot been established in the youngest age groups. Similarly, pharmacokinetics, dosing levels andintervals are unavailable for many drugs. This is particularly true for patients who fall into thetwo periods of rapid physical growth and maturation: infancy and puberty. Pediatricians oftenextrapolate information from adult studies, using promising medications in difficult situationsand “guesstimating” doses. However, adult medications may not be available in formulationsthat young children can swallow or doses that young children can take. Some routes of administrationmay be frightening or painful.PainManaging pain involves identifying and treating any reversible causes of pain (e.g. infectionsresponsive to antibiotic therapy). Specific pain management should complement curative therapiesuntil the underlying problem is resolved and no longer causing pain. Many pains, especiallyin advanced disease, will elude clear delineation of etiology or be due to conditions for whichthere is no effective therapy. In these circumstances, specific pain management is the preeminenttherapy. (See Chapter 4: Pain.)Within the field of pediatrics, we have experience with non-pharmacologic approaches such asdistraction, relaxation, and breathing techniques for procedure-associated pain. Health careproviders treating children and adolescents need to expand and refine the use of these techniquesfor chronic and complex pain syndromes.Providers also need to be comfortable with the use of analgesics (Table 12-5). Having a few basicmedicines in our armamentarium will go a long way toward relieving patient pain. Understandingtheir mechanisms of action, dosing options, and potential for synergistic effects, side effectsand toxicities reduces the barrier of provider ignorance and discomfort.276U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau