My 3yr Old Has Systemic Jra Posted: 01-19-05 18:57pm
I am wondering if there is anyone out here
who can tell me there story with this form
of the illness.... The dr's are great at
letting me know text book information
about her illness.... However they lack
the abulity to tell me more about long
term effects and issues. For instance; I
had no idea that it would be a possibulity
that I would be giving my baby shots
weekly... Yet here we are doing it... I
hate it when she asks me "why mommy give
me shot" omg... It kills me!!!!
I was hoping that someone out there might
be willing to share there experance with
systemic jra..... Maybe tell me what you
had to go thru... Or thing I might expect
to have to deal with.
I might add that she was diagnosed last
march at age 2... She has been severely
effected by this.... Has had the
inflamation around her heart (they drained
over 4oz that was compressing her heart
they said another few house she would not
be here now)... She gets naproxen, and
prednizone (sp?) daily and methatrexate
(sp?) shots weekly. She had a long
recovery from the first flare up. This
included learning to re sit up, turn over,
walk, run, climb stairs ect... She is in
special education pre school and they are
helping her delays in speach and social
emotional and behavorial issues.
Thank you all for any info:)
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StarChilde
New User, Becoming EHEALTHy
Joined: 07 Jun 2005 Posts: 5 Location: Midwest Flatlands
Our 3 Yr. Old Has It Too Posted: 06-10-05 14:35pm
Seems your daughter was really affected by
this. Our daughter kaelyn was diagnosed
with it @ age 2. She has been on
methotrexate shots since feb. 2004, and
has to start getting another one, enbrel
in the next week. I can't tell you long
term effects. I know her ped. Rheumy
said hers was still reversible & we
should do all we can now. She has
systemic jra also.
Her Dr. Took her off the prednisone; said
there was too many side effects.
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brendabean
New User, Becoming EHEALTHy
Joined: 11 Jun 2007 Posts: 2 Location: vermont
My 3 Year Old Has It Too Posted: 06-11-07 21:27pm
after being sent home several times from
the ER and twice from the pediatrician
saying it was the flu when our son had a
fever of 105 for a week and couldnt walk
and had a rash over his body , we brought
him to a childrens hospital an hour away
from home and found that he had JRA ...his
liver was enlarged kidneys not functioning
well, heart enlarged and constant vomiting
, they first said they couldnt rule out
luekemia and couldnt treat him until then.
They waited 2 days and then put him on
high dose steroids. we were in the
hospital for 2 weeks. I was 8 months
pregnant with our third and completely
beside myself. He is now on methotrexate
injections, enbrel injections and daily
steroids and his sed rate is still
climbing. it was 120 at the hospital and
fell to 52 recently, now it is back at 77
and we are very frustrated as to what to
do for him because all these drugs have
such potential for negative side effects!
We are trying fish oil and cutting out
dairy and red meats which is supposed to
help with the inflamation. Will let you
know what happens
