Managing Chronic Health Needs in Child Care and Schools: A Quick Reference Guide

294 Pages·2018·12.816 MB·English

by  Elaine A. Donoghue, Colleen A. Kraft

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Managing Chronic Health Needs a
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This fully revised and updated resource helps teachers, administrators, n
How-to help at a glance! , Care and Schools
school nurses, and caregivers address the challenges of caring for chil- 2i
More than 50 quick reference sheets cover specific conditions nc
dren with chronic health conditions and special health care needs in that school staff and caregivers deal with daily, including d
child care and school settings. Health issues covered include chronic EH
■ Allergies ■ Down syndrome
illnesses, acute situations, and select developmental and behavioral ■ Anaphylaxis ■ Eczema (atopic dermatitis) die
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problems. More than 50 quick reference sheets offer guidance on ■ Asthma ■ Food allergies ioa
how to help at a glance. ■ Attention-deficit/ ■ Hearing loss and deafness/ nl A Quick Reference Guide, 2nd Edition
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hyperactivity disorder hard of hearing h
Beyond specific conditions, this guide also addresses topics with
universal relevancy such as Care Plans, medication administration, ■■ ABlueteisdmin gsp deicstorrudmer dsisorder ■■ HKiedanret yc oannddi toiothnesr urinary N
emergency planning, and symptoms that develop while on-site.
■ Cancer tract problems e
Ready-to-use sample forms, letters, and Care Plans are also
■ Celiac disease (gluten- ■ Muscular dystrophy e
included for easy implementation. sensitive enteropathy ■ Seizures d

or celiac sprue) ■ Sickle cell disease s

■ Cerebral palsy ■ Spina bifida
About the Editors i
■ Childhood obesity ■ Visual impairments n

Elaine A. Donoghue, MD, FAAP ■ Cystic fibrosis ...and more!
Elaine A. Donoghue, MD, FAAP, is vice chair for ■ Diabetes C

academic affairs at Lehigh Valley Health Network and h

a general academic pediatrician. She is past cochair
ALSO AVAILABLE i
of the American Academy of Pediatrics Council on l
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Early Childhood and authored the policy statement
on quality early education and child care. Her background is in C

early childhood health, child protection, telehealth, and pediatric
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education. Dr Donoghue received her undergraduate degree from
Georgetown University and her doctorate in medicine from For more child care and r
Tulane University School of Medicine. school resources, visit e

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Colleen A. Kraft, MD, MBA, FAAP n

Colleen A. Kraft, MD, MBA, FAAP, is the 2018 president
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of the American Academy of Pediatrics. Her background o
includes work in primary care pediatrics, pediatric n
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education, and health care financing. Dr Kraft received g
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her undergraduate degree fromVirginia Tech and her
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doctorate in medicine from Virginia Commonwealth University. e
She completed her residency in pediatrics at Virginia Common- • o EDITORS
wealth University. Through her work in early childhood and K o Elaine A. Donoghue, MD, FAAP
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population health, Dr Kraft seeks to translate the goals of health a l
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equity into medical practice. t Colleen A. Kraft, MD, MBA, FAAP

AAP
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CHAPTER 1: INTRODUCTION: SAFE AND APPROPRIATE CARE OF CHILDREN WITH CHRONIC HEALTH NEEDS • • • i
A M E R I C A N A C A D E M Y O F P E D I A T R I C S
Managing Chronic
Health Needs in Child
Care and Schools
A Quick Reference Guide, 2nd Edition
EDITORS
Elaine A. Donoghue, MD, FAAP
Colleen A. Kraft, MD, MBA, FAAP
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American Academy of Pediatrics Publishing Staff
Mary Lou White, Chief Product and Services Officer/SVP, Membership, Marketing, and Publishing
Mark Grimes, Vice President, Publishing
Eileen Glasstetter, MS, Senior Editor, Professional/Clinical Publishing
Leesa Levin-Doroba, Production Manager, Practice Management
Amanda Helmholz, Medical Copy Editor
Linda Diamond, Manager, Art Direction and Production
Sara Hoerdeman, Marketing Manager, Consumer Products
345 Park Blvd
Itasca, IL 60143
Telephone: [phone]
Facsimile: 847/434-8000
www.aap.org
The American Academy of Pediatrics is an organization of 67,000 primary care pediatricians, pediatric medical subspecialists,
and pediatric surgical specialists dedicated to the health, safety, and well-being of infants, children, adolescents,
and young adults.
The recommendations in this publication do not indicate an exclusive course of treatment or serve as a standard of medical
care. Variations, taking into account individual circumstances, may be appropriate.
Listing of resources does not imply an endorsement by the American Academy of Pediatrics (AAP). The AAP is not responsible
for the content of external resources. Information was current at the time of publication.
Brand names are furnished for identification purposes only. No endorsement of the manufacturers or products mentioned
is implied.
The publishers have made every effort to trace the copyright holders for borrowed material. If they have inadvertently
overlooked any, they will be pleased to make the necessary arrangements at the first opportunity.
Images with the credit line “PedFACTs” were printed with permission by American Academy of Pediatrics and
National Association of School Nurses. Pediatric First Aid for Caregivers and Teachers (PedFACTs), 2nd Edition, 2012:
Jones & Bartlett Learning, Burlington, MA. www.jblearning.com.
This publication has been developed by the American Academy of Pediatrics. The authors, editors, and contributors are
expert authorities in the field of pediatrics. No commercial involvement of any kind has been solicited or accepted in the
development of the content of this publication.
Every effort is made to keep Managing Chronic Health Needs in Child Care and Schools consistent with the most recent advice
and information available from the American Academy of Pediatrics.
© 2019 American Academy of Pediatrics
All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or
by any means—electronic, mechanical, photocopying, recording, or otherwise—without prior written permission from the
publisher (locate title at http://ebooks.aappublications.org and click on © Get Permissions; you may also fax the permissions
editor at 847/434-8780 or e-mail [email protected]). First edition published 2010; second, 2019.
Printed in the United States of America
9-403 1 2 3 4 5 6 7 8 9 10
MA0865
ISBN: 978-1-61002-175-3
eBook: 978-1-61002-176-0
Library of Congress Control Number: 2017950658
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Reviewers/Contributors
Editors
Elaine A. Donoghue, MD, FAAP
Colleen A. Kraft, MD, MBA, FAAP
Contributors
Abbey Alkon, PhD, PNP
Angela A. Crowley, PhD, APRN, PNP-BC
American Academy of Pediatrics Reviewers
Committees, Councils, and Sections
Committee on Fetus and Newborn
Committee on Nutrition
Committee on Pediatric AIDS
Council on Children With Disabilities
Council on Early Childhood
Council on Genetics
Council on School Health
Fetal Alcohol Spectrum Disorders
Section on Dermatology
Section on Developmental and Behavioral Pediatrics
Section on Endocrinology
Section on Gastroenterology, Hepatology, and Nutrition
Section on Hematology/Oncology
Section on Infectious Diseases
Section on Neurological Surgery
Section on Obesity
Section on Ophthalmology
Section on Oral Health
Section on Orthopaedics
Section on Otolaryngology - Head and Neck Surgery
Section on Pediatric Pulmonology and Sleep Medicine
Section on Urology
Additional Reviewers
Susan S. Aronson, MD, FAAP
Danette S. Glassy, MD, FAAP
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,.
The inspiration for this book was drawn from many people who taught me
the importance of loving care and respect for all people with and without special health care needs,
but especially my parents, John and Helen Donoghue, and my brother, Robert Donoghue.
Thank you to all my mentors and colleagues at the American Academy of Pediatrics,
and special thanks to our reviewers and contributors.
Elaine A. Donoghue, MD, FAAP
,.
I am most grateful to my children, Daniel, Julie, and Tim Kraft,
who as young adults inspire my goal to build healthy environments for all our children
to grow and develop. I continue to be influenced by Patsy Moon,
who supported me as a young mother and pediatrician by providing an outstanding
early education environment for my children, even 32 years ago, at the
Medical College of Virginia Hospital Family Care Center.
As child health professionals, let’s celebrate our team approach to
optimizing the health and wellness
of the children in our care.
Colleen A. Kraft, MD, MBA, FAAP
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• • • vii
Contents
➊
Chapter Introduction: Safe and Appropriate Care of Children With Chronic Health Needs ......................................1
From the Editors About the Book Title ...............................................................................................................................3
Overview of the Book...................................................................................................................................................................4
➋
Chapter Background .......................................................................................................................................................................................5
Families, Health Professionals, and Child Care and School Providers: A Three-Way Communication ...7
Three-Way Communication Among Pediatric Team, Family, and Early Education Professional ...........7
Individuals with Disabilities Education Act (IDEA) .......................................................................................................8
Early Intervention Services (Part C of IDEA) .....................................................................................................................8
Special Education and Related Services (Part B of IDEA) .......................................................................................10
Special Needs in Grades K Through 12 .............................................................................................................................11

Chapter The Treatment Team: Partners in Caring for Children With Chronic Health Needs ..................................13
Role of the Health Consultant...............................................................................................................................................15
Core Team ........................................................................................................................................................................................15
Other Team Members ................................................................................................................................................................15
Role of Therapists ........................................................................................................................................................................16
Concept of a Medical Home ...................................................................................................................................................16
Benefits of a Medical Home ...................................................................................................................................................16
Role of Pediatric Subspecialists ..........................................................................................................................................17
Types of Pediatric Subspecialists ........................................................................................................................................17
➍
Chapter Care Plans ........................................................................................................................................................................................19
Care Plans: An Overview ...........................................................................................................................................................21
Children Who Need a Care Plan ...........................................................................................................................................22
Why Child Care Programs and Schools Need Care Plans ........................................................................................22
What the Care Plan Should Include ...................................................................................................................................22
Partners Responsible for the Care Plan ...........................................................................................................................22
Health Care Professional Responsibilities ....................................................................................................................22
Parents/Guardians Responsibilities ..................................................................................................................................22
Child Care or School Provider Responsibilities ...........................................................................................................23
Tips for Completing the Care Plan ......................................................................................................................................23
Care Plans for Schools ..............................................................................................................................................................23
Care Plans by Type ......................................................................................................................................................................24

Chapter Care Plan Implementation Strategies for Teachers and Caregivers ................................................................25
Developing and Implementing the Care Plan ...............................................................................................................27
Model Child Care Policies and School Regulations That Support Inclusion ................................................30
Communicating About the Care Plan ................................................................................................................................30
Content of Practices and Policies in a School or Child Care Program .............................................................31
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viii • • • CONTENTS
➏
Chapter Medication Administration Issues ......................................................................................................................................33
Federal Law, National Standards, and State Regulations ......................................................................................35
Nursing Delegation and Medication Administration ................................................................................................36
Best Practice Medication Administration: Essential Elements ............................................................................36
Ongoing Support by a Health Consultant .......................................................................................................................38
Advocating for Training and Support ................................................................................................................................38
➐
Chapter Handling Symptoms That Develop While a Child Is in Child Care or School ................................................41
Children With Special Health Care Needs .......................................................................................................................43
Advanced Training for Child Care and School Providers .........................................................................................43
Documentation of Symptoms................................................................................................................................................43
➑
Chapter Planning for Emergencies .......................................................................................................................................................45
Planning for Individual (Child) Emergencies .................................................................................................................47
Children With Terminal Illnesses and Do-Not-Attempt-Resuscitation Plans ..............................................47
Planning for Programmatic (Facility) Emergencies ...................................................................................................48
When to Call Emergency Medical Services (and Also Notify Parents/Guardians) ....................................48
Situations That Require Urgent Medical Attention ....................................................................................................49
➒
Chapter Transportation Issues ...............................................................................................................................................................51
Vehicle Transportation ..............................................................................................................................................................53
Field Trips .........................................................................................................................................................................................53
Pedestrian Issues .........................................................................................................................................................................53
➓
Chapter How to Use the Quick Reference Sheets .........................................................................................................................55
⓫
Chapter Quick Reference Sheets ...........................................................................................................................................................59
Abnormal Immunity: An Overview ......................................................................................................................................63
Allergies: An Overview ...............................................................................................................................................................65
Allergic Skin Conditions............................................................................................................................................................67
Anaphylaxis .....................................................................................................................................................................................71
Asthma ...............................................................................................................................................................................................75
Attention-Deficit/Hyperactivity Disorder (ADHD) .......................................................................................................79
Autism Spectrum Disorder (ASD) .........................................................................................................................................83
Bleeding Disorders: An Overview ........................................................................................................................................87
Cancer ................................................................................................................................................................................................91
Celiac Disease (Gluten-Sensitive Enteropathy or Celiac Sprue)..........................................................................93
Cerebral Palsy (CP) .......................................................................................................................................................................95
Childhood Obesity ......................................................................................................................................................................99
Cleft Lip and Cleft Palate .......................................................................................................................................................101
Cystic Fibrosis (CF) ....................................................................................................................................................................105
Developmental Delay ...............................................................................................................................................................107
Diabetes ..........................................................................................................................................................................................111
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CONTENTS • • • ix
Down Syndrome ..........................................................................................................................................................................115
Eczema (Atopic Dermatitis) ..................................................................................................................................................117
Ehlers-Danlos Syndrome (EDS) ...........................................................................................................................................119
Fetal Alcohol Spectrum Disorder (FASD) ........................................................................................................................121
Food Allergies ..............................................................................................................................................................................123
Fragile X Syndrome ....................................................................................................................................................................127
Gastroesophageal Reflux Disease (GERD) ...................................................................................................................129
Gastrostomy Tubes ....................................................................................................................................................................131
Hearing Loss and Deafness/Hard of Hearing .............................................................................................................133
Heart Conditions: An Overview ..........................................................................................................................................137
Heart Conditions, Nonstructural .......................................................................................................................................139
Heart Defects, Structural ......................................................................................................................................................143
Hepatitis ........................................................................................................................................................................................145
Hip Problems (Developmental Dysplasia of the Hip, Legg-Calvé-Perthes Disease,
and Slipped Capital Femoral Epiphysis [SCFE]) .........................................................................................................147
HIV Infection ................................................................................................................................................................................149
Hydrocephalus and Shunts ..................................................................................................................................................151
Immune Thrombocytopenia .................................................................................................................................................153
Juvenile Idiopathic Arthritis (JIA) ......................................................................................................................................155
Kidney and Other Urinary Tract Problems ....................................................................................................................157
Marfan Syndrome .......................................................................................................................................................................161
Mitochondrial Disorders .......................................................................................................................................................163
Muscular Dystrophy .................................................................................................................................................................165
Neonatal Abstinence Syndrome (NAS) ...........................................................................................................................167
Neurofibromatosis (NF) and Tuberous Sclerosis Complex (TSC) .....................................................................169
Prader-Willi Syndrome (PWS) ..............................................................................................................................................171
Preterm Newborns (Preemies): An Overview ...............................................................................................................173
Seizures, Febrile ..........................................................................................................................................................................177
Seizures, Nonfebrile (Epilepsy) ...........................................................................................................................................179
Short-Stature Conditions .......................................................................................................................................................181
Sickle Cell Disease ....................................................................................................................................................................183
Special Diets and Inborn Errors of Metabolism.........................................................................................................187
Spina Bifida ..................................................................................................................................................................................189
Spleen Problems ........................................................................................................................................................................191
Tracheostomy ..............................................................................................................................................................................193
Traumatic Brain Injury (TBI) (Includes Concussion) ...............................................................................................195
Turner Syndrome........................................................................................................................................................................197
Vesicostomy .................................................................................................................................................................................199
Visual Impairments ..................................................................................................................................................................201
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