Introduction

[Guest guest]

I am new to the list. We have custody of our 2 year old granddaughter (and her

5 year old brother). The doctor suspects she may have systemic JRA. Our first

visit to the pediatric rheumatologist is next Monday. We will be going to

Lucile Packard in Palo Alto, CA. What should we expect? How long does it take

to determine a diagnosis? After reading so many stories about pain here, I am a

little frightened for my budding and imaginative two year old.

Her symptoms include swelling of all joints in her hands, feet, elbows and

knees. She has lost much of her ability to move her right ankle and getting a

properly sized shoe on without hurting her is almost impossible these days. She

is extremely stiff in the mornings and after her nap.

She is no longer interested in food and seems to be very small for her age. She

weighs around 20 pounds and is 28 months. When we first got custody, the doctor

was not sure if the joint swelling was due to malnutrition or JRA. Now she

feels that the malnutrition has been addressed that it is time to look at JRA.

In addition to pain which makes it hard for her to sleep all night (usually she

wakes up every 2-3 hours screaming and needs to be lifted and adjusted.), she

seems to tire quickly. She is so excited when she is " running " . It is so funny

to see her yell out, " Look gramma, I am running! " when she is quick pacing a

circle in the living room. Or Look I am jumping -- when her feet never launch

off the bed -- it does slightly bounce. I just tell her I am proud of her and

keep up the good work. I never thought I would be telling a two year old it is

okay to jump on the bed.

A couple of weeks ago she developed a very fine rash all over her chest and arms

-- some on her face. The doctor felt it was measles but after reading the

various posts here, I wonder. She did have her MMR shot last year.

I'm not sure what to expect. We are just at the beginning of what sounds like a

potentially long road. I am worried.

Gramma LaLa

Deb

California