's bloodwork and a little vent I guess-

June 26, 2006

I recieved 's bloodwork results on Friday, and they were

identical to Kylie's except for the sed rate. Ana -, RF-,

everything considered normal, even her sed rate, which came in at

19. Kylie's was 17. This to me, shows the last sign, (other than

waiting the official 6 wks) that this does in fact look like JRA.

It interests me though, that both of their sed rates are still

relatively low. What would my rate be? Would any of you know, I

mean the average person's rate? I would assume what, zero? I have

read that some of your children's sed rates were well into the 30s,

so 17 & 19 are not bad by any means. I know that none of you

probably have the answers to this, but does it not seem odd that

they both seem to have it- and that they are both seemingly mild

cases? Or could it just be the calm before the storm?! 's

been able to walk eveyrday since Thursday, with some stiffness and

limping in the morning, and sometimes throughout the day. The

swelling is still obvious, and so is the heat coming from that

knee. I also noticed Kylie seems to have a new toe swollen as well

as A LOT of heat coming from the new joint affected. Should I be

calling Vogler (rheumy) to mention that? I started the mtx last

week, and from what I understand it takes up to 4 wks for results,

but should we up the naproxen? I know I am talking out my a#$ right

now, I am just more overwhelmed than I ever thought I would be.

Any input would be great, sorry so long-

Tanis

Kylie 3, pauci

22 months, unspecific mono arthritis

June 26, 2006

Tanis - It is difficult enough to have two small children but for them both

to be possibly looking at JRA diagnosis - my heart goes out to you and the

girls. Don't change the naproxen unless you talk with Vogler first. The MTX

could take a few weeks to really kick in. If it gets to the point that the

girls are in a lot of pain or the swelling is really noticeable call Vogler.

Hunter is in a flare right now - both ankles last week were so swollen - her

lower back was hurting as well as neck pain, rash and fever. We did labs and

her SED was only 8 - personally I think the lab screwed up - so does the doc.

We will redo labs in a couple of weeks. The main things is to get our girls

pain free and back to being little girls. Hunter is doing great - we are

going up on her MTX this week so we can get her off the steriods. Are you

going to the Conference? Sandi Ken Hunter (7 Systemic)

June 26, 2006

Tanis,

As you already know, the sed rate isn't always a good indicator for lots of our

kids. As for Robbie - the sed rate goes along with his flares - his sed rate

has been over 100. 80 - 90 range with most flares and it has taken months in

the past to get back to normal. The CRP (C-reactive protein) can be a better

indicator for some kids. I would contact the rheumy before making any changes to

the Naprosyn - unless you have already discussed a range of medication to be

given, and the changes you make fall in that range. My rheumy would want to

know if there were significant changes - like new joints for Kylie - though, I

probably wouldn't have called about a new joint unless it continued, since much

of 's pain was migratory. I hope that the girls are doing well. Hany in

there!

Val

Rob's Mom (8,systemic)