Children with special healthcare needs are children with chronic physical, developmental, behavioral, or emotional conditions that require health and related services beyond what is required by children in general.^1,2 This population accounts for about 16% of children in the United States,^3,4 accounts for 40% to 80% of all pediatric healthcare utilization and costs, and is the fastest-growing group in pediatrics.^3,5,6,7,8,9 Compared to children without chronic conditions, children with chronic conditions tend to be older, male, and from non-Hispanic white racial/ethnic groups.^4,6,10,11 The clinical spectrum of conditions is diverse, and complex medical devices are often required for care (Tables 146-1 and 146-2).^{6,8,9,10,12,13,14}

An emergency care plan provides information and instructions for emergency care. Components of the plan include an information form, special instructions for devices or emergency conditions, and ancillary replacement supplies.

The individualized emergency information form should be provided at the ED visit (http://www.childrensnational.org/files/PDF/EMSC/PubRes/EIForm.pdf). Informational elements of the form include demographic and emergency contact information; names and contact information for the primary and specialty care physicians; diagnoses, past procedures, and baseline examination findings; allergies; immunizations; procedures to avoid; common acute problems and suggested management; and comments on other specific medical issues or special instructions for device malfunction. Information should be regularly updated. Copies of the form should be available at the home, physician’s office, and care facilities.

The care plan should include special instructions for EMS personnel, first responders, or family members who may need to provide emergency care for the child.^12,13 A “go-bag” or kit with specialized equipment should accompany the child. Such kits contain extra tracheostomy tubes, appropriate size suction catheters, equipment to change a tracheostomy tube, syringes and adapters to decompress a feeding catheter, a bag-valve mask resuscitator, and needles to access central lines.¹⁷

Optimal emergency care requires access to multiple healthcare resources, including family, primary care physicians, specialists, and home health nurses (Table 146-3).^12,13,17 Long-term caregivers know the child’s baseline status and are familiar with medications and supportive equipment.

HISTORY AND PHYSICAL EXAMINATION

The child may not be able to communicate directly. Elicit essential elements of the history and subtle symptoms from family or care providers; occasionally, a call to a chronic care facility or review of past medical records is necessary to obtain important details. Inquire about advanced directives, limitations of care, and family goals as well as treatments prior to ED arrival. Carefully review medications including recent changes or missed doses, allergies (e.g., latex), and comorbidities. The physical examination, too, often relies on accompanying family or care providers, particularly with regard to mental status, assessment of pain, and changes from baseline. Obtain vital signs. Baseline vital signs for children with complex medical conditions may be out of the range of normal. Core temperature may be low at baseline, and a “normal” temperature may represent fever; baseline values for heart rate, respiratory rate, and oxygen saturation may be abnormal; vital signs may be controlled by a pacemaker or ventilator. Obtain an accurate weight to calculate weight-based medication dosing. To obtain a current weight, if a conventional floor scale is not appropriate, ask caregivers for the most recent weight, use a bed scale, or consider a length-based tape to estimate weight. When performing a head-to-toe evaluation, pay special attention to medical devices and equipment: palpate ventricular shunts for swelling or tenderness; check patency of tracheostomy tubes; assess central or peripherally inserted vascular catheters for patency and signs of infection; and examine gastrostomy sites and feeding tubes.

LABORATORY TESTING AND IMAGING

The specific evaluation depends on the presenting problem and underlying special healthcare needs. Perform bedside glucose testing in all complex patients with altered mental status. Check serum drug levels (e.g., anticonvulsants) as appropriate. Compare plain radiographs and CTs with prior imaging results to distinguish acute from chronic changes.

Although treatment is tailored to the presenting condition, the universal approach of prioritizing airway, breathing, circulation, and disability remains the same. A general overview of common respiratory, metabolic, neurologic, GI, and musculoskeletal problems and suspected abuse follows. A review of the complications common to children dependent on medical technology is discussed separately later, under “Technology-Dependent Children.”

RESPIRATORY DISORDERS

Oral motor dysfunction and gastroesophageal reflux can lead to aspiration, wheezing, pneumonia, and chronic congestion. Scoliosis and neuromuscular disease may compromise pulmonary mechanics and lead to functional restrictive lung disease with limited respiratory reserve. To evaluate acute respiratory complaints, obtain a thorough history of past respiratory function, especially in the situation of prematurity; escalating home therapy including supplemental oxygen use; reactive airway disease; or tracheomalacia. Airway instability can develop in the child with poor head control, and simple head repositioning or jaw thrust may improve airway mechanics and decrease pooling of saliva in the oropharynx. Suction and change tracheostomies as needed. Consider foreign body aspiration in appropriate clinical circumstances. Treatment of respiratory distress in this population may include deep suctioning, replacement of malfunctioning equipment (tracheostomy tubes, ventilators), β-agonists for bronchospasm, antibiotics for pneumonia, and subspecialty consultation for airway foreign bodies. Admission is generally warranted for pneumonia, increased home oxygen requirement, persistent respiratory distress, or removal of a foreign body.

METABOLIC DISORDERS

This diverse category of disorders is due to genetic defects that lead to abnormalities in the metabolic pathways of proteins, carbohydrates, and lipids (see chapter 144, “Metabolic Emergencies in Infants and Children”). Although a detailed understanding of individual biochemical pathways is not necessary for emergency management and evaluation, general familiarity with presenting signs and symptoms is necessary, because recognition in the ED could be lifesaving. Initial laboratory studies should include a CBC, serum glucose, electrolytes with anion gap, blood gas, ammonia, liver function tests, urine ketones, and lactate dehydrogenase, aldolase, and creatine kinase if there are muscular symptoms. After verifying adequate airway, breathing, and circulation, direct care to correct acute metabolic abnormalities such as hypoglycemia (Table 146-4).¹⁸

Consult a biochemical geneticist for further diagnostic evaluation and management guidance.

SEIZURES

The prevalence of epilepsy is estimated at 4 to 9 cases per 1000 children but is as high as 35% among children with special needs.^19,20,21

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