Children With Special Healthcare Needs

Transcription

1 Children With Special Healthcare Needs

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3 Our agenda today Children with special healthcare needs Children with special psychiatric needs

4 I. Introduction to Children With Special Health Care Needs (CSHCN)

5 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.

6 CSHCN: Epidemiology 12 million US children are considered special needs, which is 18% of all U.S. children From: 1994 National Health Interview Survey on Disability Estimated that 25% of children treated in pediatric EDs have special needs From: Pediatric Emergency Care, Vol 12, No. 3 June 1996

7 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

8 CSHCN: Equipment Technology-Assisted Children Feeding catheters Tracheostomies Colostomies Ventilators/BiPAP Pacemakers Central venous catheters Glucometers CSF shunts Nebulizers Vagal nerve stimulators Apnea monitors

9 CSHCN: Important Points Assess and manage ABCs as with any other child Listen to parents/caregivers They know problems and treatments very well

10 II. Common Chronic Pediatric Illnesses: Pulmonary Disorders and Airway Defects

11 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

12 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

13 III. Cardiovascular Defects

14 Cardiovascular Defects Congenital Heart Defects (CHDs) 1 in 1,000 live births Two types 1. Acyanotic 2. Cyanotic

15 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.

16 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

17 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

18 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 O 2 unless O 2 saturation is below usual Otherwise, never withhold oxygen!

19 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

20 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

21 IV. Down Syndrome

22 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

23 Down Syndrome Signs/Symptoms of DS Large tongue Short neck Obesity Short stature Loose ligaments Epicanthal folds

24 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 Down Syndrome

25 V. Traumatically Disabled Children

26 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

27 VI. Neurologic Diseases

28 Neurologic Diseases Causes of Seizures Epilepsy Traumatic brain injury Genetic/metabolic defect Congenital brain abnormality Including mental retardation Tumor

29 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

30 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

31 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

32 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)

33 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

34 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

35 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

36 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

37 Neurologic Diseases Cerebral Palsy Management Braces Wheelchairs Oral medications Baclofen intrathecal pumps

38 VII. Hematology and Oncology Diseases

39 Hematology and Oncology Sickle Cell Anemia (SCA) Diseases An inherited hemoglobinopathy that causes sickling of RBCs Characteristics Pain, vaso-occlusive crisis Splenic sequestration Aplastic crisis Sepsis

40 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

41 X. Musculoskeletal Disorders

42 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

43 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

44 XI. Tips for Chronic Conditions

45 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.

46 Tips for Chronic Conditions Assess and manage ABCs as with any other child Listen to parents/caregivers They know problems and treatments very well

47 A Different Look Why CSHCN Caregivers Call 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

48 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

49 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.

50 II. The ABCDEs: Interventions Using Special Technology

51 AIRWAY: Tracheostomies

52 Airway Tracheostomy An artificial airway passed through a surgical opening (stoma) in the anterior aspect of the neck and into the trachea

53 Airway Tracheostomy Indications: To bypass an upper-airway obstruction To provide long-term mechanical ventilation To facilitate clearance of excess secretions

54 Airway Tracheostomy Types and Features Single Lumen Double Lumen Fenestrated

55 Airway Interventions: Position of comfort Humidified air or O 2 Nebulized 1:1000 epinephrine, if protocols allow If child is in extremis, consider endotracheal intubation

56 Airway Alleviating Respiratory Distress Position Suction Oxygen Repeat An emergency tracheostomy tube change may be necessary.

57 Airway When to ventilate manually Upon removal from ventilator Consider before/after suctioning or trach change Signs of respiratory distress or failure

58 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

59 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

60 CIRCULATION: Central Venous Catheters

61 Circulation Purpose of Central Venous Catheters Administration of Medications Delivery of chemotherapy Nutritional support Infusion of blood products Blood draws

62 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

63 DISABILITY

64 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

65 Disability Cause of symptoms: Shunt infection If child presents with a fever or redness along the shunt tubing, suspect a shunt infection Meningitis Encephalitis

66 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

67 Disability Concern The shunt could be damaged or disconnected. This can result in increased intracranial pressure.

68 Disability Causes of Complications: Brain infection Shunt obstruction (resulting in a dangerous build-up of fluid in the skull) Shunt malfunction Peritonitis

69 Children with Special Healthcare Needs Cerebrospinal fluid shunts Emergency care Vomit, aspiration Suction O2 Assist breathing, intubate Blood sugar Treat seizures

70 Children with Special Healthcare Needs Shunt Drainage Routes

71 Children with Special Healthcare Needs External Shunt Infection

72 EXPOSURE

73 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.

74 IMPORTANT POINTS Cover the child to maintain normal body temperature Respect the child s privacy

75 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.

76 II. SAMPLE History: Feeding Catheters

77 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

78 Feeding Catheters Gastrostomy Feeding Tube (GT): Catheter surgically or endocopically placed into stomach or Jejunum Provides long-term nutritional support

79 Feeding Catheters Feeding Catheter Complications: Gastric contents can leak, causing irritation Tube obstructed Tube dislodged Abdominal distention

80 I. Moving Children with Special Needs

81 Communication Challenges: Language barriers Is the person with the child the primary caregiver? Assess child s ability to understand. Developmental delay Visual/auditory deficits

82 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.

83 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.

84 Environment Management: Limit the number of providers. Ask one person to speak and interact with the child. Decrease chaos. Keep the noise down.

85 TRANSPORT AND TRANSFER

86 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!

87 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!

88 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.

89 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 but not transport decisions! *100 CSHCN families surveyed in 2000

90 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.

91 EMS Response Volatile situations require shift from common EMS response to integrated community collaboration and adaptive out-ofthe-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.

92 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.

93 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.

94 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.

95 For more information on pediatric psych issues and EMS response: 5/meeting_challenges_pediatric_be havioral_emergencies.pdf