TIS                         
Chapter 3
The Chronically Ill Infant and Child

The influence of chronic illness on children’s development is of paramount importance to therapists working with this population of patients. Researchers have suggested that chronically ill children might develop in different ways due to their condition, in addition to family and environmental factors. The manner and extent to which a chronic illness may modify typical developmental processes depend to a large degree on the illness, its severity, its natural history and expected prognosis, the degree of limitation associated with it, the presence or expectation of mental retardation, its genetic background and implications, necessity for care, and the degree to which the illness if visible and thus known to the wider community.

Chapter 3 will present common chronic illnesses in children and suggest therapeutic interventions appropriate for each.

There are varying degrees of chronic illnesses to those that are severely affected to those that have mild or minimal symptoms. However, research is showing that mildly affected children are actually poorer at coping with their disease and are subject to increased emotional and psychological problems than children that are more severely involved. It seems that unlike severely affected children, who constantly have to battle with illness-related difficulties and are able to recognize their own limitations, mildly affected children try to deny or hide their conditions and behave as if they were without any risk of medical difficulties. It has also been suggested that less severely affected children may also try to function in both worlds, that of the normal and that of the sick child, leading to inability to function effectively in either world.

CHRONIC ILLNESS - refers to an illness that can last an extended period of at least 3 months and often for life, and cannot be cured. Thus, medical care is aimed at management of the illness through pain control (sickle cell anemia), reduction of exacerbations or attacks (asthma), bleeding episodes (hemophilia), or seizures (epilepsy). Treatment is aimed at reducing the potentially negative effect of the chronic illness to enable the child to adopt a normal life style.

CHRONIC JOINT DISEASES

Juvenile rheumatoid arthritis (JRA) - a group of diseases characterized by chronic joint inflammation thought to be an autoimmune disorder in response to infection or trauma.
  1. Systemic JRA- multisystem involvement in addition to multiple joint pain and inflammation. May include pericarditis, myocarditis, hepatosplenomegaly.
  2. Polyarticular JRA - Involvement of 5 or more joints usually symmetrical distribution. Knees and ankles frequently involved; elbows, wrists, and fingers less often and rarely cervical spine. More prominent in girls.
  3. Pauciarticular JRA - most frequently seen of the JRA types with joint involvement of 4 joints or fewer with 2 further subgroups.
Treatment interventions should be directed at functional limitations dependent on pain and joint mobility limitations and consideration of any organ system involvement. Gait is usually affected through diminished velocity and stride length with antalgic characteristics. Crutches, or a walker may be necessary to maintain ambulation. Gait determinants should be considered with emphasis on functionality and stability while working within the limitations of pain. Endurance should be worked toward and effective self-range of motion and positioning programs to rest inflamed joints while reducing the risk of contracture or increasing deformity. Elbow, wrists, and finger involvement may also affect activities of daily living and may also negatively impact the ability of the upper extremities to bear weight in gait.

Sickle cell anemia - blood disorder predominantly seen in individuals of African descent where the red blood cells assume a crescent shape. This disorder causes intense localized muscle and joint pain with the possibility of embolic-like cell clusters causing paralysis or secondary paresis. Limited respiratory reserve is noted with contraindications for any cardiorespiratory challenge.

CHRONIC MUSCLE DISEASES

Muscular dystrophy - genetically related intrinsic muscle disease that may be progressive in nature. There are several different types of dystrophies categorized as MD. CHRONIC NEUROLGIC DISEASES

Spina bifida - is a congenital malformation of the spinal cord and/or vertebral malformation. There is some evidence that hot baths early in a pregnancy, and/or the lack of folic acid may increase the likelihood of this infant manifestation. This disorder is often associated with hydrocephalus. There are several grades and type of spina bifida:
CHRONIC MEDICAL CONDITIONS

Asthma - may or not be a genetically based chronic lung disorder often associated with allergies. BPD of infancy may progress to asthma conditions. Medications usually can control the symptoms and the child should be able to participate in all activities normally when in control medically. Activity should be encouraged along with self-instruction to even the youngest child to recognize triggers and appropriate preventative routines.

Cystic fibrosis - inherited progressive disorder of the exocrine glands that produces pancreatic insufficiency, hyperplasia of mucous-producing cells in the lungs, excessive electrolyte secretion by the sweat glands, and digital clubbing.
Congenital heart conditions - there are several structural cardiovascular anomalies associated with arrested development occurring during gestational days 18 - 50. Rubella infection, maternal drug and alcohol ingestion, radiation exposure, maternal infections, and maternal diabetes have all been suggested as contributory.
Hemophilia - x-linked recessive disorder resulting in impaired blood clotting capability which causes pain and reduced range of motion and muscle strength in joints into which bleeding occurs. The hinge joints of the knee, elbow, and ankle are typically affected and may lead to arthritic conditions. Intracranial bleeding can lead to death. The same developmental tasks and challenges experienced by healthy children are also experienced by chronically ill children. However, the ability to master these tasks and cope with the typical stresses of childhood can be made more difficult by the presence of an illness. Physiological aspects of the disease itself, medications and other forms of treatment, frequent hospitalizations, disruptions in daily activities, and alterations in family relationships are some of the potential factors that may restrict the normal development in chronically ill children. Thus, the therapist is challenged to create therapy interventions that allow for functional progress while being mindful to the chronicity of the underlying conditions.


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