NIH Clinical Center

Pediatric Development and Chronic Illness

General: Coping and adjustment to living with a chronic illness is an on-going process influenced by many factors. Parent and child adjustment may include grief, denial, anger, acceptance, and adaptation. Denial may manifest as medical nonadherence or declining treatment against medical advice (AMA). Anger may manifest as conflict with staff or within families. Developmental intervention assessment is recommended for children under the age of 3 years needing hospitalization for more than 2-4 weeks.

Period/Age	Physical Growth	Gross and Fine Motor	Language/ Cognitive	Affect/ Social	Behavioral Issues	Suggested Interventions	Issues with Chronic Illness	Suggested Interventions
INFANCY < 6 months	Gains 10 grams/d	Grasps finger	Alerts to light/dark	Alerts to faces	1-3 mos: Colic	1-3 mos: Crying, peaks at 6 weeks, resolves by 3-4 mos. To decrease over-stimulation, swaddle infant, use white noise, swing, car rides. Avoid frequent formula changes and medication. Relieve primary care taker for short periods.	Neonate: Chronic illness may decrease infant's access to environment. Physiological stability is essential for development in all other areas. Parental guilt, grief or anger may interfere with attachment as well as the infant's ability to respond.	Neonate: Help caretaker cope with infant's pattern of sleep, feeding, and elimination. Encourage parents to express feelings and identify them as normal. Give factual info about known causes of problem. Guide parents to establish physical and emotional contact with infant. Help parents develop a sense of competence.
INFANCY < 6 months	3-4 mos: Growth 20g/day	Sits with head steady	4 mos: Gurgles and laughs out loud	Prefers to face outward	3-4 mos: Waking at night	3-4 mos: Comfort quietly, avoid reinforcing night waking behaviors. Avoid feeds or play at night. Consistent bedtime routine. Place down while drowsy/ not fully asleep.	Infancy: Major separations from parents may interfere with attachment. Infant's social responsiveness may be decreased. Developing trust is dependent on having needs met in a consistent manner — this may be difficult to achieve in hospital setting. Inconsistent care and separations may lead to mistrust.	Infancy: Help families maintain consistent presence during hospitalization. Maximize opportunities for parents to participate in care, learn about their infant's characteristic responses. Teach when to stimulate infant and when to decrease intensity. Communicate infant's characteristics with other care providers.
Period/Age	Physical Growth	Gross and Fine Motor	Language/ Cognitive	Affect/ Social	Behavioral Issues	Suggested Interventions	Issues with Chronic Illness	Suggested Interventions
*6-12 months*	Doubles Birth weight 5-7 mos: Eruption of deciduous incisors	Sits, grasps, transfers toys	Startles to loud sudden sounds 6 mos: Babbles	Recognizes friendly, warning, angry voices Reaches in anticipation of being picked up by familiar person	< 6 months: Separation difficulty transferring care from caregivers to others		Illness may lead to a sense of helplessness.	Encourage parents to provide opportunities for exploration and mastery as much as possible using appropriate toys and play
*6-12 months*				Reorganization issues of feeding and sleeping re-emerge	9 mos: Stranger anxiety/ separation anxiety begin Waking at night	9 mos: Use transitional object. Have routine to transition from parent. Keep lights off, avoid picking up or feeding, and reassure verbally.
*12 -15 months*	Triples birth weight Anterior fontanel of head closes	Walks alone Dislikes any restraint Finger foods, feeds self Uses index finger to point	First words in addition to mama, dada Understands and uses gestures	Expresses many feelings May recognize feelings in others Enjoys active games peek-a-boo, chasing Short attention span	Aggression	Say "No" with facial cues. Begin time out (1min/year) — no eye contact or interaction, place in non-stimulating location. Emphasize child proofing and distraction.	May be delayed in motor and language milestones.	Encourage parents to continue fostering independence when possible. Discuss parents' disappointment with delays in milestones.
Period/Age	Physical Growth	Gross and Fine Motor	Language/ Cognitive	Affect/ Social	Behavioral Issues	Suggested Interventions	Issues with Chronic Illness	Suggested Interventions
TODDLERHOOD 18 months	Growth rate begins to slow and appetite declines	Toddlers master reaching, grasping and releasing by stacking blocks, imitation and putting things in slots	Points to major body parts Uses jargon	Short attention span Temper tantrums with fatigue, anger or frustration Pretends Carries a special toy or doll	Tendency to tantrum Noncompliance with medical regimen Temper-tantrums	Determine cause and react appropriately. Maintain safety of environment.	Illness may hamper exploring and using motor skills. Parents may overprotect and be reluctant to set limits. Some conditions affect ability to control bowel and bladder functions.	Help parents devise methods so child can move and play independently if possible. Give child simple choices when possible. Discuss flexibility versus firmness in limit-setting. Successful toileting should be broken down into small specific behaviors.
*24 months*	Head growth slows slightly	Runs well, kicks ball Builds tower of 6-7 cubes Right or left handed Imitates vertical and circular strokes with pencil	Speaks about 50 words Associates names with most familiar objects Limited understanding of time; language focuses on here and now May reverse pronouns	Has strong positive or negative reactions Intense sense of self-importance Anticipates routine events Parallel play	Coping mechanisms developing Tendency to regress Toilet training	2-4 y: Introduce potty, avoid pressure or punishment for accidents. Expect some periods of regression, especially with stressors. Readiness requires interest, neurological maturity, ability to walk, to undress self, desire to please, increased periods of daytime dryness.	Illness may further delay potty training. Assess readiness.	Help parents assess child's ability to tolerate frustration. Help parents prioritize limit-setting.
*3 years*	Deciduous teeth calcified	Rides a tricycle Can undress self Imitates 3 cube bridge Copies a circle Builds tower of 9-10 cubes	Understands about 500 words Can give first and last name Uses three to four word sentences Can match four colors Can remember three directions at a time	Understands taking turns Enjoys helping others Gender identity-knows own sex, body parts Beginning to play with others	Magical thinking and cognitive distortion Phobias Susceptible to fears of harm to body Nightmares Night terrors	Avoid scary movie or TV. Avoid over tiredness. Explain they had a bad dream and there are no monsters under the bed. Nightlight Be calm, speak soothingly in repetitive tones, return to sleep, protect against injury.	Illness cause is thought to be punishment for bad behavior. Parents may overprotect. Regression occurs in most children during illness. Initiative may be discouraged.	Help parents verbalize concerns, suggest parent's strengths. Help parents encourage age independence and self reliance. Encourage play to help child explore experiences and feelings about illness. Help child prepare for procedures by repeating facts several times and playing out procedures.
Period/Age	Physical Growth	Gross and Fine Motor	Language/ Cognitive	Affect/ Social	Behavioral Issues	Suggested Interventions	Issues with Chronic Illness	Suggested Interventions
SCHOOL AGE	2-5 years: avg gain in wt 2kg/yr, ht 7cm/yr. 6-10 years: avg gain in wt 3 kg (7 lb)/yr; ht 6 cm (2.5 inches)/yr. Maximum growth velocity is during Tanner 3 for girls, Tanner 4 for boys.							Work with school regarding nature of child's illness, limitations, etc. Facilitate regular school attendance. Normalized school and life experiences cannot be overemphasized. Med staff may need to act as liaison as child advocate. Educate teachers and peers. As much as possible, children should participate in their own care and decisions affecting their treatment. Children need actual honest information about their disabilities.
*4-6 years*	Eruption of permanent first molars and central incisors Average size (50th%) at 4y is 40 in and 35 lbs	Walks downstairs one step per tread 4y: Skips 5 y: Copies square 6y: Rides two wheel bike Complete anal sphincter control Can give name and address Ties shoe laces	Speech becomes intelligible, fluent, grammatically correct Understands cause and effect Understands joke, sense of time Increase of magical egocentric and perception bound cognition	Developing guilt Coping with anger, fears of dark, heights, dogs, death Sensitive to blame and praise Playgroups, often same sex Curious about marriage, birth, death	Relapse of bedwetting Interference with school learning, social development, motor development	Help to identify stressor, maintain previous toileting practice. Maintain primary caregiver as much as possible.	Although opportunities may be diminished, allow opportunities to participate in school, hobbies and interactions with peers. May have decreased interactions with peers. May feel different. May miss out on experiences that lead to the normal development of self-esteem and sense of mastery.	Allow children to have control over diet and medications as appropriate.
*6-12 years*	Frontal sinuses develop Brain myelinization complete by 6-7 years of age	Increased ability for complex movements such as shooting basketballs, dancing and playing the piano	Increasingly able to apply rules based on observation Able to understand alternate points of view Able to sustain attention from 20-45 min.	Central issue of self esteem Competitive Ritualistic play Hobbies	Decreased mastery, poor self esteem	Develop hobbies, enhance wide range of talents to experience success.	9-12y ("Tween"): "over valued-overprotected syndrome" — parents restrict physical and social activities using disease as excuse/ alienate peers. Social isolation/ withdrawal.	Encourage enhancing peer relationships through participation in clubs and sports.
*10-13 years*			Concrete operations Conventional morality	Self consciousness Bids for independence Same sex groups Conformity	Ambivalence about independence	Gradual transfer of responsibility, i.e.: chores, money handling. Encourage parents not to make ambivalent actions or statements	Obstacles — person's emotional state, denial, anger, depression and lowered self-esteem.	Encourage enhancing peer relationships through participation in clubs and sports.
Period/Age	Physical Growth	Gross and Fine Motor	Language/ Cognitive	Affect/ Social	Behavioral Issues	Suggested Interventions	Issues with Chronic Illness	Suggested Interventions
ADOLESCENCE	Female Tanner Breasts I preadolescent II breast buds/ enlargement of III continued enlargement IV areola and papilla form second mound V mature stage Male Tanner Genital I preadolescent, testes < 4 ml II increase and reddening of scrotum, testes (4-6 ml), III increase penis length, testes 8-10 ml IV increased penis breadth, development of glans, testes 12-15, darkening scrotal skin V genitalia adult in size and shape, testes > 15 ml Tanner Pubic hair I No hair II sparse downy hair III dark course hair, crosses midline IV adult type hair, no spread to thighs V adult quantity and distribution Average age of menarche is 13.5 years		Emergence of abstract thought and introspection Understands death Able to conceptualize future	Adjusting to changing body, sexual drive surges Loosens ties to family Dating Concern with attractiveness	Acting Out	Parents need to maintain limits using reasoning centered around safety. Psychosocial/ Medico social history Assess HEADSS: Home Education Activities Drugs Sexuality Suicide/Depression *Intervene as needed	Despite stresses, most children with chronic illness do not have intellectual impairment or psychopathology, nor do they have severe social and behavioral mal-adaptations if provided equal opportunities. Given adequate resources (parental support, school inclusion), can successfully achieve their developmental milestones and a moderate to high level of functioning. Noncompliance. Concerns about appearance and medication side effects, surgical scars. Wanting to be normal. Denial — sense of invincibility threatened. Potential for risk taking behavior, i.e., drugs, unprotected sex.	Identify feelings of anger as normal and offer support. Assist parents in facing some of the complexities of possible living arrangements. Help develop skills for self care. Respect need for privacy. Peer support groups. Encourage adolescents to initiate friendships. Help parents to understand their adolescent as a sexual being. Provide info about contraception. Social supports buffer the effect of stressors and health outcomes and are an important predictor of physical and psychological health.
*Late adolescence 16 +*			Idealism; absolutism	Consolidation of sexual identity Intimacy Decisions related to education +/or work

This information is prepared specifically for caregivers involved in clinical research at the NIH Clinical Center at the National Institutes of Health.