RE: [JRA]/ Conference and Digest Number 5379

[Guest guest]

Hi, . My son's illness started in his ankles too. I think the

thing with the pain at night is that they notice it more. That is not to

say that they do not have it at other times, but that it seems to get

worse because they are tired and trying to relax and with less to occupy

the mind, the pain becomes more noticeable. With we noticed

morning stiffness too. It took over seven months of in pain before

we finally found the right dr who diagnosed him. Didn't get rid of the

pain, but got us on the right path. I understand your worry as just

controlling the pain will not help stop the progression of the disease

itself. Unfortunately it can take time to get the right diagnosis and

then the right meds to control the disease.

As for pushing the drs, remember you are your child's only advocate. She

has no one else to speak for her. You are paying these drs good $$ to

find out what is wrong and if they cannot help you, you will try to find

some that will. Don't worry about seeming like a pushy mom, follow your

instincts. If you think there is something going on, then there probably

is. Educate yourself as best you can, and question the drs when you go

in. Make sure you understand what they are saying to you when they give

you direction. When my son's pain and stiffness did not go away even

after the " best foot and ankle dr in town " (as one orthopedist called

him) said that he was all better, I called my ped's office and explained

what was going on. She told me that was enough; let's get him to a

rheumatologist. My ped and her staff were very supportive and helpful

through all that we were going through. She always told me to trust my

instincts. That was the support we needed. Then after his diagnosis I

found this group and it has been the best resource I could find.

Let us know how things are going and post whenever you need to. Someone

here has surely been through what you are going through, Michele (

20, spondy)

________________________________

From: [mailto: ] On

Behalf Of Schulman

Sent: Thursday, January 17, 2008 2:17 AM

Subject: Conference and Digest Number 5379

I'm relatively new to the group and have been mostly lurking and

learning from you these days.

Beth and everyone...are you referring to the National Juvenile Arthritis

Conference in Costa Mesa this summer? I'm in CA (daughter is seen by

rheumy at UCLA) and should probably attend this one. What do you think?

My kiddo is 6 years old and not textbook either. She has chronic joint

pain (mostly at night, which I don't understand at all) in her ankles

and, on bad nights, it migrates to her wrists, knees, etc. Her WBC

count, IgA, IgG, etc. are low and controlled with IVIG. I'm so worried

about us not preventing progression of " it " and only doing pain

management (which is a struggle as well). Nights are treacherous and we

are constantly struggling with " it " ...what to do...how far to push her

docs...are there answers to be had...

mom to 6 year old, JIA? CVID