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Parents & Families Caring for Your Child & Family

Caring for Your Child & Family Learning About Diagnoses & Conditions

Learning About Diagnoses & Conditions Angelman Syndrome Anxiety Disorders Arginase Deficiency Asthma Attention Deficit Hyperactivity Disorder ADHD Autism Spectrum Disorder Biotinidase Deficiency Celiac Disease Cerebral Palsy Childhood Absence Epilepsy Childhood Obesity Constipation Cornelia de Lange Syndrome Cystic Fibrosis Depression Down Syndrome Duchenne & Becker Muscular Dystrophy Fabry Disease Fatty Acid Oxidation Disorders- MCADD_LCHADD_VLCADD)Fetal Alcohol Spectrum Foster Care Fragile X Syndrome Galactosemia Headache Hearing Loss & Deafness Homocystinuria Infantile Spasms Inflammatory Bowel Disease Intellectual Disability Leukodystrophy Maple Syrup Urine Disease_MSUD Mucopolysaccharidosis Type I_MPS I Myotonic Muscular Dystrophy Neonatal Opioid Withdrawal Syndrome_NOWS Neurofibromatosis Type 1 Phenylketonuria PKU POTS Prader-Willi Syndrome Premature Infant Follow-Up Rett Syndrome Seizure Disorders Spina Bifida Spinal Cord Injury Spinal Muscular Atrophy Tourette Syndrome Transgender & Gender-Diverse Youth Traumatic Brain Injury Tuberous Sclerosis Complex Turner Syndrome 22q11.2 Deletion Syndrome XXY Syndrome

Healthcare Terms & Acronyms Finding Quality Information

Finding Quality Information Using Health-Related Social Media

Understanding Healthcare Problems

Understanding Healthcare Problems Before a Diagnosis

Before a Diagnosis Screening Tests and the Diagnostic Process When There are Concerns

After a Diagnosis or Problem is Identified

After a Diagnosis or Problem is Identified Responding to a Diagnosis Top Ten Things to Do After a Diagnosis

Family Support

Family Support A New (or Old) Diagnosis - You Are Not Alone Taking Care of Yourself & Your Family

Taking Care of Yourself & Your Family Caring for Yourself Caring for Your Marriage or Relationship Caring for Your Other Children Caring for Your Family & Friends Tips for Single Parents of Children With Special Needs Fathers of Children with Special Needs Respite Care Spiritual Needs

Funding Your Childs Special Needs

Funding Your Childs Special Needs Appealing Funding Denials Financing Your Childs Healthcare Understanding Your Health Insurance Services for the Uninsured & Under-insured Understanding the Affordable Care Act (ACA) & the Health Insurance Marketplace

Legal Issues

Legal Issues Laws to Know

Laws to Know HIPAA/FERPA

Estate Planning, Trusts, and Accounts Guardianship and Alternatives End of Life Issues When Parents of Children with Disabilities Divorce

Support Groups Personal Stories

Personal Stories Things I Wish I'd Known Change it Anyway Thoughts From a Single Parent of a Great Kid I Can Play Advocating for My Daughter Building New Hopes & Dreams Cycling & Perseverance A Parent Perspecive on Dealing With Ignorance Welcome to Holland

Life Transitions with Your ChildMeeting Your Childs Needs

Meeting Your Childs Needs Early Childhood Services

Early Childhood Services Early Intervention Part C Program Additional Early Services

Caring for Children with Special Health Care NeedsCommon Problems

Common Problems Constipation

Emotional, Behavioral, & Mental Health

Emotional, Behavioral, & Mental Health The ABCs of Behavior Behavioral Therapies Everyday Strategies to Help Improve Wellness Apps to Help Kids and Teens with Anxiety Music Therapy Service Animals & Pet Therapy Trauma Treatment Models & Ratings

Addressing Bullying Social Issues & Opportunities Recreation Activities Education & Schools

Education & Schools Education FAQ Forms for Education School Options Special Education & Accommodations

Special Education & Accommodations Special Education Laws & Process Individualized Education Plan (IEP)504 Plan IEP & 504 - What is the Difference Medical Needs at School

Adaptive/Assistive Options

Adaptive/Assistive Options Adaptive Cycling Adaptive Driving Adaptive Play & Assistive Technology Adaptive Skiing Augmentative Communication_AAC Hearing Aids Home Retro-fits Switches Wheelchairs & Adapted Strollers

Wish Granting Groups

Working with Providers

Working with Providers Partnering with Healthcare Providers Assistance in Choosing Providers

Assistance in Choosing Providers What Choices Does Your Insurance Offer Choosing a Primary Care Clinician Choosing a Subspecialist Choosing a Therapist Choosing a Mental Health Provider Choosing a Complementary & Alternative Medicine CAM Provider Dental Care Levels for CSHCN Trauma Treatment Models and Ratings

Working with Outside Caregivers

Physicians & Professionals Providing a Medical Home

Providing a Medical Home The Patient-Centered Medical Home Coding & Billing

Coding & Billing Causes of Hearing Loss, with ICD-10 codes Coding for Developmental & Mental Health Screening Optimal Clinical Coding for CYSHCN

About Children & Youth with Special Health Care Needs CYSHCN Care Coordination

Care Coordination Questions & Answers about Care Coordination Family-Centered Care Coding & Billing for Care Coordination Working with Insurance Companies Care Coordinators as Family Advocates Resources for Care Coordinators

Care Coordination in Portal Partner States

Care Coordination in Portal Partner States Care Coordination in New Mexico Utah Children's Care Coordination Network

Utah Children's Care Coordination Network Resources of the Month 2020 Resources of the Month 2019 Resources of the Month 2018 Resources of the Month 2017

Pediatric Mental Health Care Access Program

Pediatric Mental Health Care Access Program Nevada Pediatric Mental Health Care Access Program (PMHCAP)Rhode Island Pediatric Psychiatry Resource Network (PediPRN)

Common Issues for CYSHCN

Common Issues for CYSHCN Caring for Transgender & Gender-Diverse Youth Children with Short Stature Born Small for Gestational Age CBD for Neurologic Conditions in Children Congenital Diaphragmatic Hernia (CDH)Contraception & Menstrual Management Developmental Coordination Disorder Drooling in Children with Special Health Care Needs Integrative Medicine for CYSHCN Mild Traumatic Brain Injury (TBI) & Post-concussive Syndrome Neonatal Opioid Withdrawal Syndrome (NOWS)Oral Health Osteoporosis & Pathologic Fractures Pain Management

Pain Management Behavioral Management of Pain Pain in Children with Special Health Care Needs

Procedural Anxiety Seizures & Epilepsy

Seizures & Epilepsy CBD for Neurologic Conditions in Children Tapering Antiepileptic Medication

Self-injurious Behavior Sensory Processing/Integration Disorder Sexuality & Children with Disabilities Skin & Wound Care for CYSHCN

Skin & Wound Care for CYSHCN Care of Surgical Wounds in Children Caring for Burn Injuries in Children Ostomy Care Treating Diaper Rash

Sleep Issues

Sleep Issues Behavioral Techniques to Improve Sleep Medical Conditions Affecting Sleep in Children Sleep Disorders & Parasomnias in Children Sleep Medications

Somatic Symptom Disorder & Functional Neurologic Disorders Syncope Toe-Walking Toilet Training Children with Complex Medical Conditions Types of Hearing Loss

Education & Schools

Education & Schools Attention-Deficit/Hyperactivity Disorder (ADHD) for Educators School Accommodations: IEPs & 504s Specific Learning Disability

Feeding & Nutrition

Feeding & Nutrition Calcium & Vitamin D Feeding & Swallowing Problems in Children Feeding Tubes & Gastrostomies in Children Formulas

Formulas Affording Formula Formula Ingredients and Components

Nutritional Needs of the Preterm Infant

Guidelines & Algorithms

Guidelines & Algorithms Health Supervision & Clinical Practice Guidelines Evaluation for Suspected Ehlers-Danlos Syndrome Evaluation of Developmental Delay

Medical Technology

Medical Technology CPAP & Bilevel PAP Home Ventilators Tracheostomy

Screening & Prevention

Screening & Prevention Autism Screening Childhood Lead Exposure Childhood Obesity Screening & Prevention Congenital Cytomegalovirus (CMV) Related Hearing Loss Dental & Oral Health Screening Developmental Screening Folic Acid Supplementation & Neural Tube Defects Hearing Screening Infant & Early Childhood Social-Emotional Screening Maternal Lead Exposure Mental Health Screening for Children & Teens Prevention of Recurrent Preterm Birth Postpartum Depression Screening Psychometric Testing Screening for Eating Disorders Screening for Sleep Problems Suicidality Toxic Stress Screening

Transition Issues

Diagnoses & Conditions

Diagnoses & Conditions Diagnosis Prevalence List Other Names for Diagnoses & Conditions Super Weird Condition Super Weird Condition Draft Anxiety Disorders & Attention Deficit Hyperactivity Disorder (ADHD)Acute Flaccid Myelitis (AFM)Angelman Syndrome Anxiety Disorders Arginase Deficiency Asthma Super Weird Condition Attention-Deficit/Hyperactivity Disorder (ADHD) & Disruptive Behaviors Attention-Deficit/Hyperactivity Disorder (ADHD) & Mood Disorders Autism Spectrum Disorder Biotinidase Deficiency Bronchopulmonary Dysplasia Celiac Disease Cerebral Palsy Charcot-Marie-Tooth Disease (Hereditary Motor Sensory Neuropathy)Childhood Absence Epilepsy Congenital Diaphragmatic Hernia (CDH)Constipation Cornelia de Lange Syndrome Cranial Deformation & Craniosynostosis Cystic Fibrosis Depression Duchenne & Becker Muscular Dystrophies Duchenne & Becker Muscular Dystrophies: Cardiomyopathy Down Syndrome Fabry Disease Fetal Alcohol Spectrum Disorders Fetal Alcohol Spectrum Disorder Distinguished from Autism Foster Care Fragile X Syndrome Galactosemia Gastroesophageal Reflux Disease Headache (Migraine & Chronic)Hearing Loss & Deafness Homocystinuria (Classic)Infantile Spasms Inflammatory Bowel Disease Intellectual Disability & Global Developmental Delay LCHAD/TFP Deficiency Lennox-Gastaut Syndrome Leukodystrophies MCADD (Medium-Chain Acyl-CoA Dehydrogenase)Maple Syrup Urine Disease (MSUD)Mucopolysaccharidosis Type I & Motor Development Mucopolysaccharidosis Type I (MPS 1)Mucopolysaccharidosis Type I (MPS 1) Genetics Mucopolysaccharidosis Type I (MPS 1) Hematopoietic Stem Cell Transplantation & Enzyme Replacement Therapy Mucopolysaccharidosis Type I (MPS 1) Orthopedic Manifestations & Treatments Myotonic Muscular Dystrophy Type 1 Neurofibromatosis Type 1 Obesity in Children Obsessive-Compulsive Disorder (OCD)PKU & Pterin Defects Postural Orthostatic Tachycardia Syndrome (POTS)Prader-Willi Syndrome Prader-Willi Syndrome & Cognitive & Psychiatric Issues Prader-Willi Syndrome Genetics Prader-Willi Syndrome Nutrition & Diet Prader-Willi Syndrome and Complications from Obesity Premature Infant Follow-Up Premature Infant and Low Birthweight Premature Infant and Retinopathy of Prematurity Puberty & Pubertal Variations Rett Syndrome Seizures/Epilepsy Sickle Cell Disease Somatic Symptom Disorder & Functional Neurologic Disorders Spina Bifida Spinal Cord Injury Spinal Muscular Atrophy Substance Use Disorders Tourette Syndrome Traumatic Brain Injury Tuberous Sclerosis Complex (TSC)Turner Syndrome Tyrosinemia Type 1 VLCADD XXY (Klinefelter) Syndrome 22q11.2 Deletion Syndrome

Newborn Disorders

Newborn Disorders NB-Test-Sickle Cell Anemia Efrain Test MCADD Test Adrenoleukodystrophy (ALD)Argininemia Argininosuccinic Aciduria Beta-Ketothiolase Deficiency (BKD)Biotinidase Deficiency CACT & CPT II Deficiencies Carnitine Palmitoyltransferase 1A (CPT 1) Deficiency Carnitine Uptake Defect Citrullinemia Type 1 Citrullinemia Type II & Citrin Deficiency Congenital Adrenal Hyperplasia (CAH)Congenital Hypothyroidism Critical Congenital Heart Disease (CCHD)Cystic Fibrosis (CF)Fabry Disease Galactosemia Glutaric Acidemia Type 1 Glutaric Acidemia Type 2 Guanidinoacetate Methyltransferase (GAMT) Deficiency Hearing Loss & Deafness HMG-CoA Lyase Deficiency Holocarboxylase/Multiple Carboxylase Deficiency Homocystinuria (Classic)Isobutyryl-CoA Dehydrogenase Deficiency Isovaleric Acidemia LCHAD & TFP Deficiency Malonic Acidemia Maple Syrup Urine Disease Medium-Chain Acyl-CoA Dehydrogenase Deficiency (MCADD)Methylmalonic Acidemias Phenylketonuria (PKU)Pompe Disease Propionic Acidemia Pyruvate Carboxylase Deficiency Severe Combined Immunodeficiency (SCID)Short/Branched Chain Acyl-CoA Dehydrogenase (SBCAD) Deficiency Short-Chain Acyl-CoA Dehydrogenase Deficiency (SCADD)Sickle Cell Anemia Spinal Muscular Atrophy (SMA)3MCC Deficiency 3-Methylglutaconic Aciduria (3-MGA)2M3HBA Deficiency Tyrosinemia Type 1 Very Long-Chain Acyl-CoA Dehydrogenase Deficiency (VLCADD)

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