Abby

[Guest guest]

Hi everyone,

I am so glad I found this list! My daughter Abby, who will be 2 on

Friday, was diagnosed with pauciarticular JRA affecting one knee the

beginning of the summer, and I have been on a roller coaster ride

ever since! I had JRA (? many joints involved) as a small child,

with my last flare in 3rd grade and no symptoms until I was

postpartum with my first child (Gracie, now 4). After having Abby

two years ago, I have found myself back in the cycle of flares and

remissions in one knee. My DH doesn't understand; he tells me I

need more exercise (!?) and in the midst of this new development my

then 18 month old daughter was diagnosed with JRA! Facing her JRA

diagnosis has meant facing parts of my childhood that have long been

buried, but this is the least of my worries. I struggle every day

with whether or not I am making the right choices with her health

care. Right now she is seeing a general rheumatologist (not a pedi)

and he has her on prescription strength Naproxen with pt to begin

two times a week. I don't know if I should insist on seeing a

pediatric specialist, but I do know she is still having a lot of

stiffness and falls often. It is heartbreaking to watch her hobble

around at the park and not be able to enjoy herself as much as kids

much younger than her. But she is so strong! She hardly cries about

it and continues to be the happy and sunny little girl she has

always been. Explaining to other moms has been hard; I now remember

the kinds of responses my own mom got when she talked with the

school/ other parents about my struggles. As moms who have walked

this way before, what are your opinions about pediatric vs. general

rheumatology?? Anyone else experiencing a second generation of JRA??

Christie in Massachusetts