Release the Butterfly:
A Handbook for Parents & Caregivers of Children with Ichthyosis
A comprehensive caregiving guide for anyone caring for a person with ichthyosis.

Introduction

Section 1

• What is Ichthyosis?

Section 2:  Beginnings

• Dealing with Doctors
• Feeling at Home in the Neonatal Intensive Care Unit
• Bonding with your Baby
• Breastfeeding your Baby
• Doctors for Long-Term Care
• The Finances of Major Medical Events

Section 3:  Practical Matters

• General Advice About the Skin
• Baths
• Creams, Lotions & Ointments
• Diapers & Clothing
• Infections
• Nutrition & Ichthyosis
• Overheating
• Systemic Therapies:  The Retinoids
• Special Tips

Section 4:  Where to Turn

• Coping
• Grandparent
• Siblings and Their Special Needs
• Dealing with Grief

Section 5:  Looking Ahead

• Raising a Happy, Well-Adjusted Child
• Child Care and Preschool
• Adding to Your Family

This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

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