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Difference between revisions of "Essential Information for Children with Special Healthcare Needs"

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'''Case 5: 3 year old with metabolic disorder.  Ornithine Transcarbamylase (OTC) Deficiency (Urea Cycle Defect)'''
'''Case 5: 3 year old with metabolic disorder.  Ornithine Transcarbamylase (OTC) Deficiency (Urea Cycle Defect)'''
[[File:Example_ER_Letter_for_Metabolic_Disorder.docx|200px|thumb|left|Example ER Letter for Child with Metabolic Disorder]]]
*[[Subspecialty encounter]]  
*[[Subspecialty encounter]]  

Revision as of 18:16, 10 June 2015

Child Health Work Group Wiki

This page is for documents related to the Essential Information for Children with Special Healthcare Needs project.

Project Conference Calls: The calls fall every 2 weeks beginning at 4pm ET. Next Monday May 18, 2015

Storyboard Description

A storyboard explains the series of actions in a particular scenario as an example that highlights relevant content.

Potential storyboards to include aspects of the the following examples

  • Presenting to a new healthcare provider
    • Presenting to an Emergency Department
    • Referral to new subspecialty provider
    • Transitioning between primary care providers
    • School
    • Summer camp
  • Contingent Care Plan
    • Pumping ventriculoperitoneal shunt
    • Seizure onset
    • Sickle cell crisis
    • Respiratory distress due to airway obstruction/secretions
    • Critical/difficult airway for intubation
    • Congestive heart failure
  • Nutrition
    • Complex enteral feeding regimens
    • Parenteral nutrition
    • Dietary preferences/restrictions
  • Special device needs
    • hearing aids
    • tracheostomy/ventilators
    • feeding tubes
      • nasogastric/orogastric tubes
      • gastric tubes/buttons
      • GJ tubes
    • feeding pumps
    • nebulizer
    • apnea monitors
    • ostomy care
    • wound care
    • drain care
    • central venous access
  • Communication
    • Identifying needs of non-verbal patients
    • Indications of pain, comfort, happiness
  • Patient/Parental Preferences
    • food preferences
  • Contraindicated procedures (and rationale)
    • No BP cuff on extremity
    • No vascular access (e.g., due to venous clot)
  • Problems/Diagnoses
  • Procedures/Surgeries
  • Medications
  • Allergies
  • Immunizations

Current Storyboards in Progress

Case 1: 6 month old ex-25wk preterm infant with h/o bronchopulmonary dysplasia, complex device needs

    • ventilator dependent with tracheostomy
    • s/p Nissen and g-tube: gastric-tube feedings: pediasure xx mL bolus q 4hour during day, continuous feeds 10 hours overnight

presents to (non-primary) Emergency Department with fever & respiratory distress


      • Discharge from hospital
        • -document device characteristics (tracheostomy, g-tube), problems (diagnoses), procedures (surgeries), feeding regimen, etc...
      • Primary Care Physician appointment
        • -capture contingency plan (if respiratory distress - consider diuretics)
        • -capture primary and subspecialty providers
        • -show care in medical home (capture details, preferences) --> how care plan is developed
      • Infant presents to Emergency Department
        • -review devices, problems, medications, and contingency plans
        • -show use in external/less familiar environments

Case 2: 9 yr old with sickle cell disease Encounters:

  • Hematologist
    • -Documents contingency plan
  • Evaluation in Emergency Department for Pain Crisis
    • Hydration, baseline pain management
    • -render in browser
    • -render in printed format

Case 3: 7 year old with autism

    • Transition among providers.
    • Non-verbal patient; communication preferences captured
    • Nutritional preferences captured then reviewed


  • Scheduling an appointment with a new Primary Care Provider (Pediatrician)

File:Transfer of Primary Care Storyboard -Draft 1.docx

Case 4: 18 year old with Cystic Fibrosis patient transitioning from Pediatrician to College -devices: g-tube, vibratory vest, ?BiPAP


    • Quarterly CF Care Center check-up
    • Annual PMD Visit - pre-college visit
    • Intake at Student Health (Transition)

Aim: Transition care to new providers (new primary and subspecialty providers), communicate plan of care for pulmonary management and nutritional needs

    • Capture medications (respiratory meds - maintenance and rescue meds, enzymes, etc…)
    • Relevant labs (fat-soluble vitamins, etc..), oral glucose tolerance test
    • Baseline FEV1 %
    • Prior bacterial colonization (B. cepacia) - Infection control guidelines (Isolation)
    • Lung transplant candidate

Case 5: 3 year old with metabolic disorder. Ornithine Transcarbamylase (OTC) Deficiency (Urea Cycle Defect)

File:Example ER Letter for Metabolic Disorder.docx
Example ER Letter for Child with Metabolic Disorder



Baby should be triaged as soon as possible upon arrival in the Emergency Room even if he/she does not appear to be ill, because metabolic decompensation can occur very rapidly.

    • Notify Subspecialty Provider
    • COMMON ACUTE COMPLICATIONS: Hyperammonemia, Seizures, Cerebral Edema, Coma
    • Systemic Steroids-- Unless otherwise specified by Metabolism staff
    • THAM (Tris hydroxymethyl aminomethane)
  • Plan:

Ammonia, Venous Blood Gas, Comprehensive Metabolic Panel, Bicarbonate CBC/differential, PT, PTT, LFTs Plasma Amino acids [3 ml, green top tube, sodium heparin]. Send to Metabolism Lab


Place Peripheral IV. If unable to get venous access, place nasogastric tube. Bolus: 10-20 cc/kg of Normal Saline bolus, if indicated for dehydration. Continuous IV Fluids: D 10% with 0.45 NS Rate: x1.5 maintenance [IF NO INCREASED INTRACRANIAL PRESSURE].


  • Demographics
  • Provider Contacts
    • Provider Name, (sub)specialty, Phone, Fax, Email
  • Problem List (Diagnoses)
  • Baseline Exam and Vital Signs (include?)
  • Procedures/Surgical History
  • Contraindications
    • Allergies
    • Foods to be avoided (and rationale)
    • Procedures to be avoided (and rationale)
  • Immunizations
  • Medications
  • Contingency Plan
  • Care Plan

Care Plan Logical Information Model

Reference Documents for Similar Content:

Emergency Preparedness for Children with Special Health Care Needs [1] [2]

CMS Form 485

Storyboard Development


Please contact

  • Michael Padula
  • Russ Leftwitch