|
Home 
Featured Discussion
Parenting a Child With Arthritis
Parenting a Child With
Arthritis-The Parents say...
Wow! The Moms and Dads
came out in full force for this one! Obviously none of you are alone in
this. We'll start this discussion with some advice from the experts-you!
And each day we'll add something new.
We'll finish out the week
by adding our brand new Parents' Section to JRA World! With this much
participation in our first Parents survey, I expect the Parents' Section
to be a wonderful place, full of support for all of you!
Here's the advice you had
for each other:
Learn as much as you can
about this illness, so that you can communicate with people who are
involved in your child's care (e.g. family members, friends, health care
providers, teachers, day-care workers, etc) to ensure that informed
decisions are made regarding the best possible treatment of your child
... of every child who has JRA. There's still no cure ... but there is
hope. JRA is treatable!
-Georgina
Give your child all the love and support you can!!!! Support groups for
yourself is a great idea. It feel great to talk to others who share the
same experiences.
-Teri
Question everything and
keep the child mobile (my daughter has lost some mobility
because we didn't know any better!
-Amanda
Every
child is different. And what works well with some, won't for others. And
just to take one day at a time, and learn as much as you can about JRA.
-Linda
Find competent,
experienced Rheumatologist specializing in Juvenile RA. Get multiple
opinions! Then choose the best for your child. Do everything you can as
a family to help the child retain full motion in the joints. For someone
with severe JRA this can be very difficult... My wife sent a lot of time
every day for months and years working with our daughter doing the
physical and occupational therapy treatments several times a day at
home. The rest of us (my son and I) took up the slack and did all we
could to make it easier for my wife to focus on our daughter's needs.
Friends helped a lot, too.
-Thomas
Love your child-do all
that you can to be positive and have the whole family involved. Don't
keep secrets about JRA from anyone in the family.
-Ken
Find as much info as you
can on this disease the internet is great for this, learn as much s you
can!
Have patience:) this is hard on the loved one that is sick but, very
hard on the family too. God there is always room plenty of room for
him:) include him also. There will be good days:) and bad:( days just
keep your chin up:) Have to be strong:)
-Teena
Just to hang in there,
hopefully things will get better.
-Tracy
Talk to other people.
-Rebecca
show them your there for
them
hug them everyday and say i love you alot
encourage them to go for what they want
NEVER let JRA get them down
-Robbin
Learn as much as you can,
stay informed, and find a support group (for me, it's a message board on
the Internet)--a group where you can share your feelings, vent your
frustrations, and find people who understand all that you are going
through, people who have already walked this road and can give you
suggestions and guidelines and encouragement as new challenges (meds,
etc.) come your way.
-Tammy
Get as much information as
humanly possible and find some sort of support group.
Call your local Arthritis Foundation or ask your child's doctors.
-Robin
You are not the only one.
-Karen
JRA, as devastating a
diagnosis as it is, is a disease that you can learn to live with. It
just became a part of our family's life. At the same time, expect the
unexpected. Just when you think you have gotten to the point of learning
all you can and are handling things pretty well, JRA tends to throw you
a curve ball, sending you down a new and confusing path. Always remain
hopeful for a better tomorrow. There are so many promising developments
in the field - things that were unheard of when my child was younger.
-Carol
Get as much information
you can.
-Karen
|
