DISABILITY CHARACTERIZATION

The International Classification of Functioning, Disability and Health, known more commonly as ICF, is a classification of health and health-related domains. The components focus on body function and structure, activity and participation, and additional information including severity and environmental factors. Care providers should be familiar with standardized tools that capture the ICF components with a focus on cognitive and learning, motor, speech-language, and social and adaptive skills. These assessments are used by medical, educational, psychological, and therapeutic care providers to determine and advocate for particular educational and state supports. The focus on the following dialogue will be on assessments of motor and speech function.

Speech and language impairment can dramatically affect an individual's ability to communicate his or her wants and needs. Characterization of speech and language impairment provides means to tailor therapeutic programs and supports to meet an individual's needs. Table 2.1 lists some commonly used tools utilized by speech-language pathologists to measure the different components of these skills.

Motor skills have a significant impact on early childhood development, as early social and cognitive development partially depends on an individual's ability to explore his or her environment. Later, motor development can impact adaptive and social function. Assessing these functions in all individuals with disabilities and a therapeutic program focusing on the limitations optimize developmental and psychosocial outcomes. Table 2.2 lists common pediatric assessment and categorization tools for individuals at risk for disability.

ROUTINE HEALTH MAINTENANCE

CSHCN need to see physicians more frequently, and have seven times the number of nonphysician visits than typically developing children (6). For this diverse group of individuals, acute care concerns often distract PCPs and caregivers during these health surveillance visits. The PCP must ensure that routine health care needs are being addressed. The following are examples of health care topics that should be addressed during routine visits.

Care Notebooks are very helpful in the ongoing management of children with multiple and complex medical needs, and should be reviewed and updated at routine visits. The AAP provides specialized forms for families and medical personnel to build a Care Notebook. Care Notebooks include a child's medical history, current medications, past medical complications and their typical presentations, and a treatment plan based on presenting signs and symptoms (7). An up-to-date Care Notebook provides medical providers important information, allowing for safe and efficient care. Table 2.3 details a list of commonly used medications that are regularly utilized among individuals with CSHCN and are frequently listed in Care Notebooks.

GROWTH AND NUTRITION

Assessment of growth is a fundamental component of the routine physical examination of children. Length, weight, and head circumference should be obtained at each health maintenance visit. Obtaining a weight on a child who is unable to stand on the office scale is often accomplished by having parents hold the child while stepping on the scale themselves. This is more effective in a smaller child, but is more difficult in a larger child or one with severe spasticity or hypotonia. It is recommended that an office that cares for large numbers of children who are nonambulatory obtain a wheelchair scale, which allows the child to be weighed easily in his or her own wheelchair. Assessment of the length of a child is also problematic when the ability to stand is limited. Use of arm span as a substitution for height may be an acceptable option. Alternatives to standing height also include individual measurements of lower extremity segments when significant joint contractures are present. To obtain segmental measurements, the child is placed in the supine position

TABLE 2.1 COMMON MEASURES OF SPEECH AND LANGUAGE

Clinical Evaluation of Language Fundamentals, Fifth Edition (CELF-5) (63)

Expressive and Receptive Syntax, Semantics, Morphology

Used for age range 5 to 21 years

Comprehensive Assessment of Spoken Language (CASL) (64)

Expressive and Receptive Syntax, Semantics, Morphology, Pragmatics

Used for age range 3 to 21 years

Peabody Picture Vocabulary Test, Fourth Edition (PPVT-4) (65)

Receptive Vocabulary

Used from 2 years 6 months to adulthood

Preschool Language Scale (PLS-5) (66)

Receptive and Expressive Language

For use from birth to 7 years 11 months

TABLE 2.2 COMMON MEASURES OF MOTOR FUNCTION

INSTRUMENT

DESCRIPTION

COMMENTS

Gross Motor Function Classification System (GMFCS) (67)

Measures self-initiated movement status of individuals with cerebral palsy

Most useful for individuals between 2 years and 18 years of age Focus on functional limitations

Alberta Infant Motor Scale (AIMS) (68)

Designed to monitor and identify infants with gross motor delay

Useful for infants from birth to 18 months

Manual Ability Classification System (MACS) (69)

Describes how children with cerebral palsy use their hands to handle objects in their daily activities

Used for individuals 4 to 18 years

Beery-Buktenica Developmental Test of Visual-Motor Integration, Fifth Edition (BEERY VMI) (70)

Screen for visual-motor deficits

Used for individuals 2 years through adulthood

Bayley Scales of Infant and Toddler Development, Third Edition (71)

Cognitive, language, motor, social-emotional, and adaptive development measured

Used for children 1 to 42 months

Bruininks-Oseretsky Test of Motor Proficiency (BOT-2) (72)

Norm reference test of motor abilities

For children 4 to 21 years

Peabody Developmental Motor Scales (PDMS) (73)

Measures both gross and fine motor skills

Used for children from birth to 83 months of age

Motor Assessment of Infants (MAI) (74)

Measures muscle tone, primitive reflexes, automatic reactions, and volitional movements of infants who had been treated in the neonatal care unit

Utilized in the first year of life

on the examination table and the assessment is done by adding all of the measurements obtained from the head to pelvis, the pelvis to knees, and knees to feet. Use of knee height has also been used as another means of monitoring a child's growth (8-10).

Plotting a child's anthropometric data on a growth chart allows the PCP to track his or her nutritional status. A weight-to-length ratio below the fifth percentile may represent failure to thrive. However, growth velocity is the more important piece of information. Many children with disabilities will be below the fifth percentile for their age, but as long as their weight and length increase in parallel to a normal curve, growth may be appropriate. A child's age should be corrected for prematurity until 2 years of age. One must remember that some CSHCN have short stature as part of their disease process or syndrome. Special growth charts are available for children with Down syndrome (11), Turner syndrome (12), achondroplasia, arthrogryposis-amyoplasia, Marfan syndrome, Noonan syndrome, Prader-Willi syndrome, and Williams syndrome.

A nutritional assessment should be completed during routine health maintenance visits. When there is concern about a child's growth, a more careful investigation into the food intake is necessary. The amount, variety, and consistency of food eaten may provide the examiner with information regarding the caloric intake of the child.

Assessment of possible nutritional deficiencies may provide useful information about general health. Following serum ferritin, vitamin D, and essential elements can be very important in individuals with developmental disabilities. The amount of food eaten is important, but the amount of time it takes a child to complete a meal is also essential. It is not unusual for a child with severe cerebral palsy (CP) or an infant with spinal muscular atrophy (SMA) to eat a meal over a prolonged period. The amount of energy to consume a meal may be significant. An assessment of oral motor function during eating should be performed at health supervision visits if there is a concern for feeding problems. Prevalence estimates suggest that 80% to 90% of individuals with developmental disabilities will experience dysphagia during their lifetime (13). Signs and symptoms of feeding problems include coughing or choking while eating, a wet vocal quality during or after the meal, poor sucking, gagging easily, and vomiting after a meal. A referral to a comprehensive feeding clinic should be considered if there is a concern about the weight of the child, or his or her safety while eating. An interdisciplinary clinic may include an occupational and speech therapist, nutritionist, gastroenterologist, and/or developmental or rehabilitation physician. Assessments used to evaluate feeding in this population include behavioral feeding examinations, oral motor feeding observations, and video fluoroscopic swallow studies.

TABLE 2.3 COMMON PHARMACOLOGIC THERAPIES FOR CHILDREN WITH SPECIAL HEALTH CARE NEEDS

MEDICATION (BRAND NAME)

INDICATION (MECHANISM OF ACTION)

CONSIDERATIONS

Polyethylene glycol (Miralax)

Constipation (osmotic laxative)

Can cause diarrhea, bloating, cramping

Docusate (Colace)

Constipation (surfactant laxative; stool softener)

Can cause diarrhea, bloating, cramping

Sodium phosphate enema (Fleets Enema)

Constipation (saline enema)

Can cause dizziness, rectal trauma, electrolyte disturbances

Odansetron

Nausea (5HT3 receptor antagonist)

Can be sedating

Omeprazole (Prilosec)

Gastroesophageal reflux (proton pump inhibitor)

Give prior to meal on an empty stomach

Lansoprazole (Prevacid)

Gastroesophageal reflux (proton pump inhibitor)

Give prior to meal on an empty stomach

Ranitidine (Zantac)

Gastroesophageal reflux (histamine type 2 receptor antagonist)

Food does not interfere with absorption

Famotidine (Pepcid)

Gastroesophageal reflux (histamine type 2 receptor antagonist)

Food may increase bioavailability of medication

Metoclopramide (Reglan)

Gastroparesis (prokinetic agent)

Extrapyramidal symptoms more common in children

Erythromycin

Macrolide antibiotic (prokinetic agent

Limited data available

Levetiracetam (Keppra)

Antiepileptic

Metabolized in blood, metabolites renally excreted, lots of drug interactions, behavioral problems reported

Valproic Acid (Depakote)

Antiepileptic

Hepatotoxicity is the major side effect (is a substrate, inhibitor, and inducer of many liver enzyme pathways), also should be avoided in pregnancy

Oxcarbazepine (Trileptal)

Antiepileptic

Induces CYP3A4 liver enzyme, many drug interactions, metabolized by liver, hyponatremia reported and should be monitored

Phénobarbital

Antiepileptic, barbiturate

Interacts with many liver enzymes, is hepatotoxic, can get tolerant overtime, very sedating

Topiramate (Topamax)

Anticonvulsant

Used for infantile spasms, seizures, and migraines, metabolic acidosis and nephrolithiasis reported

Gabapentin (Neurontin)

Antiepileptic, therapy for neuropathic pain

Metabolism unknown, many drug interactions

Melatonin

Sleep initiation agent

Occasionally can see paradoxically activating side effects

Trazodone

Antidepressant, serotonin reuptake inhibitor/antagonist, sleep adjunctive agent

Limited data available but used frequently in children with developmental disabilities, important side effect is priapism

 
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