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Essential Information for Children with Special Healthcare Needs

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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: Neosure with additives xx mL bolus q 4hour during day, continuous feeds 10 hours overnight
  • presents to (non-primary) Emergency Department with fever & respiratory distress
  • Encounters:
  • 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

Case 3: 7 year old with autism

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

    • Transition among providers.
    • Non-verbal patient; communication preferences captured
    • Nutritional preferences captured then reviewed
  • possible nutrition support due to suboptimal oral intake w/ reliance on oral and / or enteral nutrition supplements
  • Indicate intolerance (but not allergy) to medication (e.g. dysphoria with valium, excessively somnolent with diphenhydramine)
    • Ketogenic diet
      • o Oral feedings including shakes with ketocal
      • o Possible med interactions – Rx and OTC medications compounded with minimal carbohydrate content (high priority/visibility)
      • o List primary pharmacy for compounding preferences
  • Possible med interactions – meds trialed in the past w/ poor reaction
  • Safety concerns
  • Behavior plan if there are safety issues
  • Developmental checklist / screening – date / time of last assessment
  • Has patient received OT, ST / SLP support – are they in place, are they needed and / or do we need to make any referrals
  • Cognitive, developmental delays / concerns


  • • Uptake encounter appointment with a new care team (medical home)

• Primary Care Provider (Pediatrician) • Neurologist • Psychiatrist • Dietician • Pharmacy (to support ketogenic diet) • Insurance information

Case 4: 18 year old with Cystic Fibrosis patient transitioning from Pediatrician to College

-devices: g-tube, vibratory vest, oxygen requirement at baseline, 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 - in the last year and based on guidelines (with update function – i.e. system should have a way to be able to capture updates to guidelines)
    • Respiratory support history (CPAP/BiPAP/trach vent settings)
    • Baseline FEV1 % and trend over 1 year and over 5 years (graph)
    • Prior bacterial colonization (B. cepacia, Pseudomonas) - Infection control guidelines
    • Contingency plan: If respiratory exacerbation, begin antibiotics (e.g., vancomycin and cefepime), increase frequency of nebulizer treatments
    • Lung transplant candidate
    • Social/behavioral issues - coping, stressors, etc…
    • non-adherence to medications

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

File:Example ER Letter for Metabolic Disorder OTC.docx


  • ''Subspecialty encounter''
  • document details about metabolic specialist contact information
  • establish plan of care:
  • -Child 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.
  • Document the following contraindications:
  • -Systemic Steroids -- Unless otherwise specified by Metabolism staff
  • -THAM (Tris hydroxymethyl aminomethane)
  • Document "COMMON ACUTE COMPLICATIONS": Hyperammonemia, Seizures, Cerebral Edema, Coma
  • -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
  • Consider details re: specialized metabolic formula (e.g., protein restriction with a specialized metabolic formula (like Cyclinex) with arginine supplementation)
  • "Emergency Room"
  • -review and execution of plan
  • -notification of Subspecialty Providers


  • 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