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:)