Children With Special Healthcare Needs

Our agenda today

Children with special healthcare needs

Children with special psychiatric needs

I. Introduction to Children With

Special Health Care Needs

(CSHCN)

CSHCN: Definition

CSHCN (Children with Special Health Care Needs) –Children who have or are at increased risk for a chronic

condition physical

developmental

behavioral

emotional

and who also require health and related services of a type or amount beyond that are required by children generally.

From: Commentary in Pediatrics, Vol. 102, No.1, July 1998.

CSHCN: Epidemiology

12 million US children are considered “special

needs,” which is 18% of all U.S. childrenFrom: 1994 National Health Interview Survey on

Disability

Estimated that 25% of children treated in

pediatric EDs have special needsFrom: Pediatric Emergency Care, Vol 12, No. 3 June

1996

CSHCN: Health Care Realities

Managed Care Complicated home care financially

driven

Parents forced to provide advanced care

Societal Changes “Family-centered care”

Disabled have right to be home

Medical Advances Portable technology

Improved techniques and medications

CSHCN: Equipment

Technology-Assisted Children Feeding catheters

Colostomies

Pacemakers

Glucometers

Nebulizers

Apnea monitors

Tracheostomies

Ventilators/BiPAP

Central venous catheters

CSF shunts

Vagal nerve stimulators

CSHCN: Important Points

Assess and manage ABCs as with any other

child

Listen to parents/caregivers

They know problems and treatments very well

II. Common Chronic Pediatric

Illnesses: Pulmonary Disorders and

Airway Defects

Pulmonary Disorders and

Airway Defects

Apnea

Definition

Respirations cease for > 20 seconds or

Respirations cease for < 20 seconds with cyanosis or bradycardia

Causes

Obstructive, central, or mixed

Affects both premature and full-term infants

Pulmonary Disorders and

Airway Defects

Cystic Fibrosis Overview

– Affects 30,000 Americans– Autosomal recessive disorder– Mucus builds up in lungs

Signs and symptoms– Increased respiratory rate– Increased oxygen requirement– Paleness or cyanosis

Management– Give active form of the abnormal protein product– Chest therapy with bronchial or postural draining– Antibiotics– Bronchodilators

III. Cardiovascular Defects

Cardiovascular Defects

Congenital Heart Defects (CHDs)

1 in 1,000 live births

Two types

1. Acyanotic

2. Cyanotic

Cardiovascular Defects

Acyanotic Heart Defects

Account for the majority of CHD in children

Mixing of desaturated blood in the systemic arterial circulation

Oxygen saturation is in the normal range

Generally septal defects, obstructions to the flow of blood, and incomplete heart development.

Cardiovascular Defects

Signs/Symptoms of Acyanotic Heart Disease

Increased respiratory rate

Increased heart rate

Heart murmur

Signs of heart failure

– Rales on lung exam

– Palpable liver edge

– Swollen extremities

Cardiovascular Defects

Types of Acyanotic Heart Defects VSD (most common)

Ventral Septal Defect

Defect in wall that separates

ventricles

ASD

Atrial Septal Defect

Patent ductus arteriosus Fetal blood passage doesn’t close after

birth

Obstructive lesions Narrows the aorta or valves

Cardiovascular Defects

Cyanotic Heart Defects

Blood from arteries and veins mix in the heart

Typical oxygen saturation—70% to 90% on room air

Palliative procedures often performed at birth

Caregivers/medical control may advise that you avoid

administration of O2 unless O2 saturation is below

usual

Otherwise, never withhold oxygen!

Cardiovascular Defects

Signs/Symptoms of Cyanotic Heart Disease Cyanosis

Increased respiratory rate, retractions

Increased heart rate

Poor perfusion

Diminished peripheral pulses

Poor feeding, sweats with feeds

Cardiovascular Defects

Types of Cyanotic Heart Defects Hypoplastic Left Heart Syndrome

Transposition of the great arteries

Tetrology of Fallot

Tricuspid Atresia

Pulmonary Atresia

Truncus Arteriosus

Cardiac Arrhythmias

IV. Down Syndrome

Down Syndrome

Down Syndrome (Trisomy 21)

Chromosomal abnormality

Affects 1 in 800 births

Highest risk: women > 35 years

At risk for medical complications of multiple systems

Down Syndrome

Signs/Symptoms of DS Large tongue

Short neck

Obesity

Short stature

Loose ligaments

Epicanthal folds

Down Syndrome

Conditions Associated with DS

Congenital heart disease

VSD, ASD, AV canal

Orthopedic conditions

Atlantoaxial subluxation

Neurologic Conditions

Epilepsy

Airway and Respiratory problems

Dental and speech abnormalities

V. Traumatically Disabled Children

Traumatically Disabled Children

Unintentional injuries are the leading cause of

morbidity and mortality

Traumatic brain injuries

Risk of seizures

May need CSF shunt/feeding tube/wheelchair

Spinal cord injuries

Difficulty regulating body temperature

Pressure sores are serious concerns

Disabled child may be unaware he or she is injured

High risk of abuse

VI. Neurologic Diseases

Neurologic Diseases

Causes of Seizures

Epilepsy

Traumatic brain injury

Genetic/metabolic defect

Congenital brain abnormality

Including mental retardation

Tumor

Neurologic Diseases

Generalized Seizures

• Tonic clonic or grand mal

Duration seconds to minutes

Most common type of seizure

• Absence

Vacant, blank stare

May occur many times a day

Myoclonic

Infantile spasms

Difficult to control

Neurologic Diseases

Partial Seizures Simple partial

One part of brain involved

Child awake and aware

Involves one limb or one side of body

Can progress to generalized seizure

Complex partial Child unconscious

Affects one side of the body

Psychomotor partial Repetitive fine-motor activity

Most common; one part of the brain

Neurologic Diseases

Management of Seizures Antiepileptic medications

Most common treatment

Home Valium per rectum

For frequent and/or prolonged seizures

Can NOT give unless you are trained to do so and with approval of medical control

Vagal nerve stimulators

Ketogenic diet

For intractable seizures

Neurologic Diseases

Hydrocephalus Excessive build-up of CSF within

the cavities of the brain

Causes

Congenital hydrocephalus

(occurs before birth)

Acquired hydrocephalus

(occurs after birth)

Neurologic Diseases

Management of Hydrocephalus CSF shunts

Ventriculoparietal shunt most common type

Shunt complications Shunt malfunction, obstruction

Infection

Signs and symptoms of shunt malfunction Headache

Nausea/Vomiting

Diminished mental status

Bradycardia, hypertension, irregular respirations

“Sundown eyes”

Neurologic Diseases

Mental Retardation

IQ < 70

Non-progressive disorder

Cause is prenatal problem, brain injury, or genetic

syndrome

Requires special education

Developmental Delay

Results from prolonged illness or prematurity

Potential to “catch up”

Requires special education

Neurologic Diseases

Spina Bifida (Myelomeningocele)

Failure of the spinal cord to fuse during pregnancy

Characteristics depends on level of lesion

Paralysis

Hydrocephalus

Delay in motor development

Loss of bladder function/UTIs

Normal intelligence

Considered to have latex allergy

Neurologic Diseases

Cerebral Palsy (CP)

Characteristics

Damage to brain center controlling muscle control

Multiple types

Congenital or acquired

Often occurs in very-low-birth-weight babies

Hypertonic, contracted limbs

50% have seizure disorder

Two-thirds have mental retardation

Neurologic Diseases

Cerebral Palsy

Management

Braces

Wheelchairs

Oral medications

Baclofen intrathecal pumps

VII. Hematology and Oncology Diseases

Hematology and Oncology

Diseases

Sickle Cell Anemia (SCA)

An inherited hemoglobinopathy that

causes sickling of RBCs

Characteristics

Pain,“vaso-occlusive crisis”

Splenic sequestration

Aplastic crisis

Sepsis

Hematology and Oncology

Diseases

Hemophilia An inherited disorder in which a factor needed for clotting

blood is either too low or missing

Incidence 15,000 in U.S. (mostly males)

60% severe form

15% moderate form

25% mild form

Characteristics Prolonged bleeding

Factor routinely administered at home

Seemingly minor injury can be serious

X. Musculoskeletal Disorders

Musculoskeletal Disorders

Osteogenesis Imperfecta “Brittle bone” disease

Incidence: 20,000–50,000 people in U.S.

Etiology Genetic disorder

Defective collagen synthesis

Multiple types, differing severity

Characteristics Bones fracture easily

Weak musculature

Growth retardation

Head disproportionately large for body

Musculoskeletal Disorders

Muscular Dystrophy

Cause

Most common type is Duchenne’s

Flaw in muscle protein

Muscle-wasting disease

Most are inherited

Characteristics

Motor skills deteriorate

Cardiomyopathy

Shortened lifespan

XI. Tips for Chronic Conditions

Tips for Chronic

Conditions

Medical Identification Jewelry

Parents trained in child’s care

Often part-time home health

care assistance

DNR forms—Follow local

protocols

EMS Outreach Program

EMS Notification

Courtesy of the MedicAlert Foundation®. © 2006, All Rights Reserved. MedicAlert® is a federally registered

trademark and service mark.

Tips for Chronic

Conditions

Assess and manage ABCs as with any other

child

Listen to parents/caregivers

They know problems and treatments very well

A Different Look

Why CSHCN Caregivers Call 9-1-1

97 of 100 CSHCN families surveyed have sought emergency care

75 sought emergency care three or more times

CSHCN require EMS services because:

Home health care equipment fails

Caregivers panic

No improvement with therapy

Child in respiratory or cardiac distress/arrest

A Different Look

Differences to Consider

Medical issues vs. equipment issues

Atypical baseline vital signs

May be smaller than same age peers

May be developmentally delayed

A Different Look

General Approach

Ask “What is normal for your child?”

Respect caregiver’s opinion on child’s condition.

Many know as much as the doctors do about their child’s

illness.

Treat the child, not the technology.

Simple illnesses can be life-threatening .

Caregivers are experienced with the medical system.

II. The ABCDEs:

Interventions Using Special

Technology

AIRWAY: Tracheostomies

Airway

Tracheostomy

An artificial airway passed

through a surgical opening

(stoma) in the anterior aspect

of the neck and into the

trachea

Airway

Tracheostomy Indications:

To bypass an upper-airway obstruction

To provide long-term mechanical ventilation

To facilitate clearance of excess secretions

Airway

Tracheostomy Types and Features

Single

Lumen

Double

Lumen

Fenestrated

Airway

Interventions:

Position of comfort

Humidified air or O2

Nebulized 1:1000 epinephrine, if protocols allow

If child is in extremis, consider endotracheal

intubation

Airway

Alleviating Respiratory Distress

Position

Suction

Oxygen

Repeat

An emergency tracheostomy tube change may

be necessary.

Airway

When to ventilate manually

Upon removal from ventilator

Consider before/after suctioning

or trach change

Signs of respiratory distress or

failure

Airway

Causes of Tube Obstruction

Improper airway positioning

Improper insertion of the trach tube

Creation of a “false track”

Mucous plug

Failure to remove obturator after tube insertion

Breathing

Interventions

Disconnect patient from the ventilator

Began manual ventilation

Assess for chest rise, breath sounds

If no improvement, check for tracheostomy-tube

obstruction

If improved, consider ventilator issue

Prepare for transport

CIRCULATION: Central

Venous Catheters

Circulation

Purpose of Central Venous Catheters

Administration of Medications

Delivery of chemotherapy

Nutritional support

Infusion of blood products

Blood draws

Circulation

Types of Catheters

Broviac, Hickman, Groshong

-Tunneled central venous catheters

- Proximal tip in the subclavian vein

- External access

Port-a-Cath/Med-a-Port/PAS Port

- Catheter system is completely beneath skin

Percutaneous Intravenous Catheter (PICC)

- Proximal tip in central vein

- Looks like a PIV

DISABILITY

Disability

Interventions

Position

Oxygen

Maintain body temperature

ALS: IV, fluids, IO

ALS: Consider inotropes for shock if unresponsive to fluid resuscitation

Assessment of neurological status

Ask caregiver to compare child’s present status to baseline

Disability

Cause of symptoms:

Shunt infection

If child presents with a fever or redness along the shunt

tubing, suspect a shunt infection

Meningitis

Encephalitis

Disability

CSF Shunts

A CSF shunt is a catheter with one end in a ventricle of the brain and the other end in the abdomen or atrium that drains excess CSF or bypasses a blockage of CSF.

Types:

Ventriculoperitoneal

Ventriculoatrial

Disability

Concern

The shunt could be damaged or disconnected.

This can result in increased intracranial pressure.

Disability

Causes of Complications:

Brain infection

Shunt obstruction (resulting in a dangerous

build-up of fluid in the skull)

Shunt malfunction

Peritonitis

Children with Special Healthcare Needs

Cerebrospinal fluid shunts

Emergency care

Vomit, aspiration

Suction

O2

Assist breathing, intubate

Blood sugar

Treat seizures

Children with Special Healthcare Needs

Shunt Drainage Routes

Children with Special Healthcare Needs

External Shunt Infection

EXPOSURE

Exposure

Interventions

Assess neurovascular status distal to the injury.

Gently place on a long-board splint.

Avoid taking the blood pressure of a child with

osteogenesis imperfecta.

Do not use a hare traction splint or MAST trousers.

IMPORTANT POINTS

Cover the child to maintain normal body

temperature

Respect the child’s privacy

IMPORTANT POINTS

Carefully examine for injuries

Assessment may be difficult due to

developmental level

CSHCN are at high risk for abuse

Report any suspicious injuries to

the proper agency.

II. SAMPLE History:

Feeding Catheters

Feeding Catheters

Nasogastric Tube (NGT):

Catheter placed through the nose into

stomach

For supplementation in children who

cannot take enough by mouth

Short-term use

Can use to decompress stomach

Feeding Catheters

Gastrostomy

Feeding Tube (GT):

Catheter surgically or

endocopically placed

into stomach or Jejunum

Provides long-term

nutritional support

Feeding Catheters

Feeding Catheter Complications:

Gastric contents can leak, causing

irritation

Tube obstructed

Tube dislodged

Abdominal distention

I. Moving Children with

Special Needs

Communication

Challenges:

Language barriers

Is the person with the child the

primary caregiver?

Assess child’s ability to

understand.

Developmental delay

Visual/auditory deficits

Communication

Management:

Use a soothing voice to provide comfort.

Explain each movement.

Ask the caregiver for a medical summary

card. Oftentimes, the caregiver may be

too stressed to remember vital

information.

Environment

Challenges:

The scene and the child’s response to

that environment can be a great source

of tension and anxiety.

Multiple providers can create fear.

Multiple voices can cause confusion.

Environment

Management:

Limit the number of providers.

Ask one person to speak and interact with

the child.

Decrease chaos.

Keep the noise down.

TRANSPORT AND TRANSFER

Transport

Challenges:

Anxiety in child.

Child may resist being restrained.

Brittle bones and muscle contractures can

easily lead to injuries during transport.

Do not pull on extremities!

Transfer

Management

Make secure, firm contact

Suggest that family member move

child.

Allow the child to lay in a comfortable

position.

Use padding around buckles and

contractures.

Do not pull on extremities!

Stabilization

Secure and transport child in own special

restraint device if:

No suspicion of cervical injury.

Child is not critically ill.

Device doesn’t impede assessment and

treatment.

Device can be properly secured in

ambulance.

Destination Decisions

Challenges: Parents’ confidence in EMS system*

82% very confident in EMS care and home hospital

77% uneasy/not confident in community hospital care

98% very confident in “home” hospital care

Parents trust 9-1-1 but not 9-1-1 transport

decisions!

*100 CSHCN families surveyed in 2000

Children with Special

Behavioral and Emotional

Needs

Behavioral emergencies involving children present special

challenges to EMS.

Aggressive behavior may really be symptom of an

underlying disorder or disability.

Parents of mentally ill children often overwhelmed and

isolated from community and social support network.

Family may hesitate to call 911 because of fear of stigma

or misinterpretation by EMS personnel.

EMS Response

Volatile situations require shift from common EMS response to integrated community collaboration and adaptive “out-of-the-box” decision making.

911 call may be from a mother or school staff member desperate for help with “out-of-control” child.

Immediate link to pediatric or mental health professionals may de-escalate the child’s psychiatric emergency and ensure continuity of care.

Unfortunately many EMS system policies, procedures, guidelines, and training do not include these options.

Common Behavioral

Emergencies in Children

• Major psychiatric disorders that may predispose to

behavioral emergencies in children include

mood disorders (e.g., depression, bipolar disorder);

thought disorders (e.g., schizophrenia);

developmental disorders (e.g., autism);

anxiety disorders (e.g., posttraumatic stress disorder);

other disorders such as attention deficit hyperactivity

disorder.

EMS considerations

EMS can assist and advocate for child and the family

during a behavioral emergency.

Family of a child with behavioral problems lives in fear of

restraints, hospitalizations, false accusations.

Understanding emotional fatigue, physical exhaustion, and

chronic life disruptions of families is is integral to

addressing their needs.

EMS Considerations

Families of children with psychiatric

disorders often have competing fears:

Love for their child

Fear of a violent outburst by the child

toward the family

Fear of the violence that may occur if the

child needs to be restrained by the police

or EMS providers.

For more information on

pediatric psych issues and

EMS response:

http://www.acphd.org/media/10932

5/meeting_challenges_pediatric_be

havioral_emergencies.pdf