This section of the website contains articles on pain, palliative care, hospice, and death.
Pain
- Functional Abdominal Pain and Visceral Hyperalgesia
- Neuro-Crying, Neuro-Irritability, or Pain?
- The Crisis in Pain Control for Children who are Complex, Non-Verbal, or Cognitively Impaired
- One in a Million Kid: HSAN Type 2
- The Screaming Infant
- Living with Ehlers Danlos Syndrome
- The Pediatric Medical Marijuana Movement
- Tackling Negative Behaviors in Children Who are Non-Verbal and Non-Mobile
Palliative Care
- Sit With Me in the Dark
- When You Know: Transitioning through Palliative Care to Death
- The Second Hardest Goodbye
- Floating with an Incurable Condition: What They Do Not Tell You
- Care Mapping for Children with Complex Conditions or Disabilities
- The Fantastic Benefits of Complex Care Programs
- Moving Gracefully through Different Levels of Care
- The Unfixable Heart Defect: Confronting Life Expectancy
- Caring for Zebras
- The Slow Decline
- What’s the Difference between Palliative Care and Hospice?
- It is Never a Bad Idea to Make the Referral to Palliative Care
- Anticipatory Grief
- The Screaming Infant
- 10 Ways to Beat the Winter Blues When Your Child is Stuck at Home
- Preserving Memories of Unconditional Love
- Quality of Life — and Death
- Preparing Financially for a Child’s End-of-Life
- The Palliative Care Approach
- The In-Betweens: A Parent/Nurse Perspective on Children with Severe Disabilities
- Palliative Care or Complex Care: Which is Right for Your Child?
- Counting Smiles Not Days: Bringing Palliative Care to Our Local Hospital
- Palliative Care and Respite Houses: A Desperate Need in the United States
- Book Review: Caring for Children Who Have Severe Neurological Impairment: A Life with Grace by Julie M. Hauer, MD
- DNRs and Advance Planning for Kids: Everything You Need to Know
- What Palliative Care Can Do for Your Child (Even if Your Kid is Not Going to Die for Years)
- Hospice and Palliative Care for Children: How the Scariest Words Can Provide the Greatest Comfort
- Making Keepsake Memories
- Trailblazing through Palliative Care
- Celebrating a Lifetime in a Year
- Turning Down the DNR
- Non-Invasive Ventilation: When a Trach Isn’t the Best Choice
- Quality of Life: Tubes, Lines, and Other Attachments
Hospice and Dying
- Communities of Grieving
- Sit With Me in the Dark
- When You Know: Transitioning through Palliative Care to Death
- The Second Hardest Goodbye
- Moving Gracefully through Different Levels of Care
- The Unfixable Heart Defect: Confronting Life Expectancy
- The Slow Decline
- What’s the Difference between Palliative Care and Hospice?
- Anticipatory Grief
- Because of Hospice
- Lydia: Life After Death
- Dying from Nothing: When You Never Get Answers
- From Birth to Death, With a Smile
- Keeping Your Child’s Memory Alive
- Quality of Life — and Death
- Preparing Financially for a Child’s End-of-Life
- 8 Unexpected Emotions at a Child’s End-of-Life
- The Palliative Care Approach
- Counting Smiles Not Days: Bringing Palliative Care to Our Local Hospital
- Palliative Care and Respite Houses: A Desperate Need in the United States
- Why I am a Proud Preemie Mom: Finding the Good in Everything
- DNRs and Advance Planning for Kids: Everything You Need to Know
- Making Keepsake Memories
- Turning Down the DNR
- What You See and What You Don’t: Diagnosing Niemann Pick, Type C
- Tommy’s Life: It’s the Legacy that Matters
Articles from the Archives
These articles from the archives have not yet been transferred over from our old website. They will open in a new window.
- The Importance of Early and Aggressive Pain Treatment in Children with Complex Medical Issues
- Vibration for Pain Control and Calming
- Types of Pain in Children with Special Needs and Their Treatment
- Autonomic Events and Crises: An Underdiagnosed Cause of Discomfort
- When No One Is Listening: Advocating Successfully with Your Child’s Medical Team
- An Introduction to Pediatric Palliative Care
- Choosing Palliative Care: Not Just for the Terminally Ill
- Keeping Your Child Out of the Hospital: Treating Serious Illnesses at Home
- A Process of Grief: The Reality of Grieving a Child with Complex Health Care Needs
- Long-Term Parenteral Nutrition as a Palliative Care Treatment
- Palliative Schooling
- Support Award: George Mark Children’s House
- Using Children’s Books to Support Siblings
- Living Your Best While Preparing for the Worst
- A Process of Grief: The Reality of Grieving a Child with Complex Health Care Needs
- Life After Mito
- Alize’s Story: How Alize Earned His Wings
- Using Children’s Books to Support Siblings
- Remembering Sebastian with Joy: Rituals of Remembrance
- Living Your Best While Preparing for the Worst