Patient and Family Education

We want you to have all the information you and your child need to understand your child’s condition and to participate in treatment. This page provides links to resources we hope will be helpful.

Resources at Seattle Children’s

• What to expect at the Cystic Fibrosis Program
• How to prepare for your visit
• Transportation and lodging
• Hospital services
• Paying for care
• Social Work

Cystic Fibrosis (CF) Resources

• Developmental Guide for Your Child with Cystic Fibrosis: Birth to 2 years (PDF)
• Developmental Guide for Your Child with Cystic Fibrosis: Age 2 to 4 years (PDF) (Spanish)
• Developmental Guide for Your Child with Cystic Fibrosis: 4 to 6 years (PDF)
• Developmental Guide for Your Child with Cystic Fibrosis: 7 to 9 years (PDF)
• Developmental Guide for Your Child with Cystic Fibrosis: Age 10 to 12 years (PDF) (Spanish)
• Giving Your Baby Pancreatic Enzymes (PDF)
• My Cystic Fibrosis Care Checklist: Age 13 to 14 years (PDF)
• My Cystic Fibrosis Care Checklist: Age 15 to 17 years (PDF)
• What is CFTR-Related Metabolic Syndrome (CRMS)? (PDF)
• Your Cystic Fibrosis Care: Age 18 to 21 Years (PDF) (Spanish)

CF and Teens

• Cystic Fibrosis: Information for Teens (PDF) (Spanish)
• CF and Teens: CF Can Lead to Diabetes (PDF) (Spanish)
• CF and Teens: Genetics - How Did I Get Cystic Fibrosis? (PDF) (Spanish)
• CF and Teens: Important Fertility Facts (PDF) (Spanish)
• CF and Teens: I Need Someone to Talk to (PDF) (Spanish)
• CF and Teens: Keep Your Bones Strong (PDF) (Spanish)
• CF and Teens: Puberty Facts for Teens (PDF) (Spanish)
• CF and Teens: Thinking about Getting Pregnant? (PDF) (Spanish)
• CF and Teens: Thinking About Having Sex? (PDF) (Spanish)
• CF and Teens: What Types of Birth Control are Right for Me? (PDF) (Spanish)

Exercise and CF

• Cystic Fibrosis Exercise Program (PDF)
• Exercise Your Future: Staying Fit With CF – Toddler (PDF) (Spanish)
• Exercise Your Future: Staying Fit With CF – School-Age (PDF)
• Exercise Your Future: Staying Fit With CF – Adolescent (PDF)

Respiratory therapy for CF

• Acapella Therapy (PDF) (Spanish)
• Active Cycle of Breathing Technique (ACBT) (PDF) (Spanish)
• Aerobika Therapy (PDF) (Spanish)
• A Look at the Lungs and Percussion Techniques (PDF) (Russian) (Spanish)
• An Introduction to Airway Clearance Techniques (CF Foundation)  
• Chest Physical Therapy (PDF) (Russian) (Spanish)
• Chest Physical Therapy (CPT) Infant/Modified Positions (PDF) (Russian) (Spanish)
• Chest Physical Therapy Standard Positions (PDF) (Russian) (Spanish)
• Nebulizers: Every Medication Should Have Its Own Nebulizer (PDF) (Spanish)
• Respiratory Equipment Cleaning Instruction for Home (PDF) (Dari) (Spanish)
• Respiratory Treatment Order (PDF) (Spanish)
• Vest Therapy: High-Frequency Chest Oscillation (PDF) (Dari) (Spanish)

CF tests and other resources 

• Chloride Sweat Test (PDF)
• Going to the Hospital for a CF Lung Exacerbation (PDF)
• Oral Glucose Tolerance Test (OGTT) for CF-Related Diabetes (PDF) (Spanish)

General Cystic Fibrosis Resources

Books

The following books are available for checkout at our Family Resource Center, or through online booksellers.

• An Introduction to Cystic Fibrosis: For Patients and Their Families (2013). James Cunningham, MD, and CF Foundation.
  Guide for patients and families. Provides definition of CF and how it affects the various parts of the body and discusses living with CF. Sixth edition. Available as a PDF.
• Cystic Fibrosis: A Guide for Patient and Family (2012). David Orenstein.
  Offers practical information on day-to-day concerns, such as school, travel, exercise, nutrition, medications, physiological effects, long-term issues and prospects of a cure. Provides answers to frequently asked questions by patients and families. Fourth edition.
• Parenting Children With Health Issues (2007). Foster Cline, MD, and Lisa Greene.
  Principles of parenting a child with special health issues. Also covers growth and development, siblings, emotional health and mental health topics.

External links

• Cystic Fibrosis Foundation
• University of Washington CF Program

Support Groups and Classes

• Sibshops
  Workshops for siblings of kids with developmental needs and/or special health concerns, including cystic fibrosis.

• Happy Heart Families
  Educational website providing practical information and offering teleclasses for parents of children with CF.

• Kindering Seattle
  Network assisting fathers as they become more competent and compassionate caregivers for their children with special needs.

• Seattle-Area CF Parent Group
  This parent-led group gives parents and grandparents of children with CF in the Seattle area a way to connect with each other.

Videos