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.”
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
"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
Communicating
with Sick Kids - Communicating
with kids who have everyday illnesses
and common injuries can be challenging.
Parents often feel unsure of what
to do or say. Sometimes, you just
want to scream, "HELP!"
yourself - but you're the one who's
supposed to be in charge.
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
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.
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.
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.
The
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.
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.
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.
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.
"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 
The
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. 
