Question of the Week... Your Responses
On occassion, the Cure JM Foundation posts an FSN Question of the Week
on the Cure JM Discussion Board.
This question gives families of JM sufferers a chance to share their
insights and experiences with other families.
Below is a list of some of the questions we have posted in the past. Click on a question to see the responses
that were submitted by other JM families.
Life Lessons:
What is one lesson that you have learned about life, as a result of your
child being diagnosed and treated for JM?
Proud Parent: Share with us a time during your child’s journey with juvenile dermatomyositis or juvenile polymositis when you were so very proud of
them.
Sun Precautions: What specific precautions do
you take to protect your child with JM from the sun?
Pick-Me Ups:
When you get down and out with sad thoughts or sad occurrences related to
your child's disease, how do you pick yourself back up? Are there tangible
ways which you could share with us that might help another to find hope...
or just find their smile again?
JM and Siblings:
If your JM child has siblings,
how does the JM impact their (sibling's) lives? In other words, how do your
other children deal with JM and is there anything special that you do to
respond?
Diagnosis Timeframe & Doctors: How long did
it take for your child to be diagnosed with JDM - from time of first symptom
until diagnosis was confirmed? As a follow-up, did your child's
pediatrician or general practicitioner know of the JDM initially? If not,
what was their response to you when you informed them of the diagnosis?
Physical Activity: What type and how much
physical activity does your JM child do?
Talking with the Pediatric Rheumatologist:
Tell
us about your interactions with your child's pediatric rheumatologist during
a normal visit. For example, do you prepare questions/concerns ahead of
time, do you take a notebook, is the appointment a listening session for you
or do you interact and ask questions throughout, do you feel you are a
partner in the decision making?
Medication Experiences:
What medications did
your child take when first diagnosed? If medications were later changed, why
were they changed and what were the subsequent medications, and how is your child faring on
his/her current regimen?
People Who Support You:
What person do you rely
upon the most for support when the going gets rough with your JM child? You
need not mention names specifically, but relationships (i.e. husband, wife,
friend, other family member, church group, etc.) and why are they special to
you in this way?
Favorite Foods: What is your JDM child's most
favorite food in the whole wide world? If you have the recipe to go along
(that is if it's more detailed than 'ice cream') share it with us!
Mother’s Day: How did you and your family
celebrate mother's day?
JM Triggers: There has been speculation about
what may have "triggered" JDM to occur in our children. There is thought
that there is a genetic predisposition but also the doctors have said that
they think there is something that triggers the immune system to respond the
way it does. (Those statements are all in laymen's terms!) Triggers could be
illness, stress, etc. Can you point to any specific 'trigger' that may have
occurred in your child prior to your noticing the JM symptoms?
Vacation Plans: Soon the kiddos will be out of
school. Do you have big plans for their time off?
Diagnosis Doctor: Which professional first
suspected and/or diagnosed JDM in your child? Was it a general practitioner,
a pediatrician, a rheumatologist, dermatologist, allergist, neurologist,
etc.?
Pychological/Behavioral
Impact of JM: Thinking about the psychological impact juvenile
dermatomyositis has on your child, can you share one specific
behavior/consequence that your child displays and how you attempt to deal
with it?
Supplements & Over the Counter Medications:
Most of our children take “supplements” for their diet... or over the
counter medications in addition to their prescribed medications. What brand
of supplements does your child take?
Psychological Impact of JM on Parent:
Where are you at, today, from a mental/psychological
perspective with your child and family's experience with JM?
PLEASE NOTE:
Question of the Week responses are derived solely from
patient/family/parent experiences and are not the advice of Cure JM nor its
agents. Question of the Week responses are not to be used as professional
medical advice. As with any issue with you or your child’s health, always
seek the advice of a physician.
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