Another new member

[Guest guest]

Hello Melt!

I am not sure if you have seen the questionaire I filled out. If have then you

will know that it is actually my 4 year old daughter that has Stills/ Systemic

Onset of JRA. Since she was 9 months she was suffering from high fevers, rashes

enlarged spleen and lymph nodes and smaller in height ( I have 2 daughters older

than her). It took about a month in Feb/March of 2005 ...where they tested her

for everything and did the many biopsies (bone marrow, skin, lymph node) ... We

were lucky that at Umass Memorial Hospital there are 3 major dept specializing

for pediatric ...Hemotology , Infectious Disease & Reumatology ....All 3

departments were fighting on whose case it was and after all the testing ( based

on process of elimination) she was said to have a " Chronic Unknown Childhood

Illness " ...and put on Prednisolone. As they tapered it off a year later all the

symptoms came back and the pred was increased ...more testing and then this name

was given to us...more failed treatments including 4 months of daily kineret

shots...then thalidamide (never used) and now a mix of methatrexate and pred.

That is her story and my most important job now is too understand her pain and

help her get through her bad days....and find a way to educate and make my other

2 girls understand. I am new to this group thing so please be patient with me.

Thank You Sincerely,

Anisha