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when your child is chronically ill
When Your Child is Ill -
Families Dealing with Chronic Illness

Being a parent with an ill child is heart-wrenching. When you have your own illness on top of it and feel like you are unable to always do or be all that your child needs, it's even more difficult. We plan to add more resources to this page as we find them... but we've not been able to find anything specific yet for ill parents who also have an ill child. We invite you to send us any resources you find or have used.

The percentage of children with chronic illnes sin the United States is about 15% to 18%. It’s hard to estimate, though, because it really depends on how you define “chronic condition.”

A Note for Moms
Helpful Articles
Sesame Street Health Tips
Services for Kids and Families
Resources
Specialty Books for Ill Kids
Teens
Check out Sunroom Support
Books to Consider for Your Child to Read
Books to Consider Reading if Your Child is Chronically Ill


The Virtual Pediatric Hospital is written for and intended primarily for use by Residents, Fellows, or Attending Physicians practicing pediatrics. Medical Students beginning their study of pediatrics or Other Health Care Providers practicing pediatrics may find it useful. Finally, Patients (including patient's family members or friends) will find "Common Questions - Quick Answers" helpful.

A Note for Moms

children with illness and parentings"Many mothers feel severely pressured these days. They often feel like they're falling short in one part, if not in several parts, of their lives. They often feel like they're failures. Well, people aren't failures when they're doing the best they can. Our performance doesn't have to be measured against anyone else's—just against our own abilities to cope." -Mister Fred Rogers

Helpful Articles
  • Psychological Complications of Chronic Illness When our child is hurting we wonder about the effect of chronic illness on child development. If your child is very ill you may be more worried about the emotional impact on children fatal chronic illnesses. Children's Hospital of Philadelphia has an excellent article on this topic.
Look at Illness and Injuries Through
Your Child's Eyes

"Understanding what's happening at each age and stage
will help you relate to your child. These insights will help
you ask questions in ways your child can answer them,
and offer answers that make sense."
Susanna Neumann, Ph.D., Psychologist Consultant
Rockefeller University, New York City
From PBSKids

click graphic to download

  • Getting Kids to Take Medicine - One of the most common health struggles between parents and kids is about taking medicine. From the infant who simply spits out the liquid to the teenager who argues, children can put up a good fight about what's good for them.
  • Giving Medication by Loren G. Yamamoto, MD, MPH, MBA
Sesame Street Health Tips

Getting Care for Your Sick Child
What you and your youngster need from a visit to the doctor

How Doctor Moms and Dads Care for Their Own Sick Kids Learn how physicians treat their own children's illnesses.

Take-Away Tips: Fever Facts
When to worry and when to wait.

Take-Away Tips: How to Reassure Your Sick Child
Help ease her fear of being sick.

Take-Away Tips: The Puzzled Parents Guide to Symptoms How to read--and respond to--your child's aches and pains.

Services for Kids and Families
Provides temporary housing for the family of an ill child within the Ronald McDonald house or sometimes within the hospital itself.
Air Charity Network, formerly known as Angel Flights, provides free airline flights for kids and adults needing treatment for their illness or condition.
Resources

St. Judes Children's Research Hospital

St. Judes Children's Research Hospital

It the place you don't want to be when you are a parent, but when you need it you are so glad it's there. St. Jude Children's Research Hospital, located in Memphis, Tennessee, is one of the world's premier centers for research and treatment of catastrophic diseases in children, primarily pediatric cancers.

St. Judes Children's Research HospitalThe mission of St. Jude Children's Research Hospital is to advance cures, and means of prevention, for pediatric catastrophic diseases through research and treatment. Consistent with the vision of our Founder Danny Thomas, no child is denied treatment based on race, religion or a family's ability to pay.

Read the founder, Danny Thomas' story

 

  • American Academy of Pediatrics This site, from the American Academy of Pediatrics (AAP) offers up-to-date health new on immunizations and other pediatric issues, health advice for parents, and links to recommended books and AAP publications. The AAP and its member pediatricians dedicate their efforts and resources to the health, safety and well-being of all infants, children, adolescents and young adults.
  • Sick Kids The Hospital for Sick Children (SickKids), affiliated with the University of Toronto, is Canada's most research-intensive hospital and the largest centre dedicated to improving children's health in the country.
  • Children's Hospital Parent Center The site helps parents care for critically-ill children, drawing on the insights from the staff at Chicago's Children's Memorial Hospital. These doctors, nurses, and social workers can help parents care for critically ill children, make decisions, find support services, and deal with accidents and emergencies.
Impress Your Kids with Weird Facts
Did you know that women blink twice as many times as men do? Or how about the fact that you use 200 muscles to take one step? Have ya had a candy bar lately? One human hair can support 3.5 ounces --which is about the weight of two full size candy bars. Hop on over to this web site to find more of these 100 Weird Facts About the Human Body. It will give your kids something fun to share with the doctor on the next visit!
  • Sick Kids Foundation
    Their mission is to inspire their communities to invest in health and scientific advances to improve the lives of children and their families in Canada and around the world.
  • Special Kids/Special Parents
    For Foster/Adoptive Families, Parents/or Caretakers of Special Needs Kids, and for anyone with Special Needs who is searching for resources.
  • Arthur's Hooray for Health!
    This series of tips and activity sheets for parents and kids focuses on topics like eating well and staying fit, dealing with asthma, dental hygiene and more, based on the popular Arthur TV program and book series.
  • Book: TLC for Parents of Seriously Ill Children
    by Rita Gray /10-session book-workbook
  • Club BraveKids
    An online club where kids with a chronic, life-threatening illness or disability can play, learn, and use their voices.
  • Hugs and Hope
    A ministry of encouragement for children battling critical illness. Every month they feature new stories and photos of sick children on the website. Their visitors and volunteers pray for, encourage, and send these children cheery postal mail (a.k.a."happy mail"). Volunteers also sponsor many special projects to brighten the lives of the children on a regular basis!
  • Kidshealth.org
    This has kid-friendly information on all kinds of health and illness topics.
  • Children's Disabilities Info
    Packed with info!
  • Patchworx
    A fun and secure on-line community that breaks down the barriers of isolation, offering a warm and friendly environment for children facing illness and disability.
Specialty Books for Ill Kids Teens

 

Looking for specialty books for your ill child or child with disabilities? Be sure to check outTurtle Books. For children with special needs, Turtle Books present heroes who look like them, have problems like theirs and have similar doubts and feelings. Tell them we sent you!

Bandaides and Blackboards
Teens share stories and poems, read teens tips to parents and teachers, and the good, the bad, and the ugly about having a chronic illness.


Check out this new video game "ReMission" that
helps kids fight cancer by HopeLabs
[about the game]

Guitar Hero for Rehab? Visit Games for Health, an organization that is bringing together medical professionals, researchers, and video game developers.

Check out Sunroom Support
Parenting Kids Under 10 When You Live with a Chronic Illness
When Your Child is Ill
Books to Consider for Your Child to Read
Books to Consider Reading if Your Child is Chronically Ill


More reviews and referrals of books about parenting
children with terminal or chronic illness.

 

 



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