Calling all Lurkers/Infrequent Contributor

[Guest guest]

Hey Everyone,

It was so nice to hear from Oliver. I'd like to push those of us who are

regular readers, but not so much contributors, to add our voices to the

board. There is so much knowledge out there in so many areas. Who are you

and who are your children? What kind of arthritis do they have? What works

for your child regarding medicines and other treatments? What hasn't

worked? Are your biggest problems medical issues, or school issues or social

interactions, or something else completely? Does having jra affect your life

all the time, some of the time, hardly at all? Let's kind of re-introduce

ourselves.

I'll start. My son Ezra has had systemic jra since the age of 4. He has been

on lots of prednisone, methotrexate, enbrel, remicade, and thalidomide.

Either nothing worked well, or for long, or he had complications with the

meds and had to be taken off. He has been hospitalized several times for

infections, MAS, and a weird lung inflammation. He started on kineret, along

with arava, IVIG every three weeks and a little bit of prednisone almost two

years ago, and has done amazingly well. He has not used a wheelchair or

slept in school for well over a year. Many of his issues have been school

and social. He has missed lots of school and is not very adept socially. He

is making progress. He has a few friends, but he's not quite in the normal

range yet. We are always waiting for the next complication or the meds to

stop working, but we are beginning to enjoy this time. It has taken me a

year not to be in " emergency mode " , every time Ezra slept a half hour later

than usual. So that's a little bit of who we are.

So, who's next?