New to this group...

[Guest guest]

Hi, and welcome to the list. You have received great advice from everyone

and I am so glad you are going on to a new ped rheumy. I hope you get some

better results. Getting her off the oral pred and the naproxen is the way to go.

One thing I like to mention, be sure to get your daughter's eye's examined. A

slit lamp test, done by an eye dr, can detect inflammation in the eye that can

occur. It is not detectable just by looking at the eye, the dr needs to examine

them. It is something that a child needs to be checked for after a diagnosis of

JA.

Keep us updated on how your daughter is doing and feel free to ask questions,

vent, whatever. As you can see, this group provides great support and lots of

info. Michele ( 23, spondy)

From: [mailto: ] On Behalf Of

Sent: Sunday, February 06, 2011 12:15 AM

Subject: Re: New to this group...

Many thank you's to Veri, Audra, , and Becki! I had my suspicions about

this, but its so comforting to hear that I'm thinking in the right direction.

One of my first questions to her pediatric rheumatologist was could we inject

the joint and he said no. Back to that being a nurse thing, I think the most

direct form of medication with as little systemic side effects would be best. I

found out today too that I work with a lady whose 12 year old daughter has poly

and she texted her peds rheumy in front of me to let him know about us and he

said " Come Monday morning, I'll do all I can to get them in. " We live in North

Central Virginia, so we're about 60 miles to DC and Richmond, and 75 to

Charlottesville. I'm really hoping this new doctor will be able to help us. I

talked at length with is's OT on Friday, and started sensing that she wanted

to tell me to find a different doctor, but most of the time you're just not

allowed to say that to your patients!

>

> Hi All! My name is and my 5 year old daughter, is, was diagnosed

with juvenile arthritis in May of last year. In March of '10 she broke her

collar bone while wrestling with her twin brother. Within a few days we noticed

that she could no longer straighten her left wrist or bend it back to make a

" stop " hand signal. After a myriad of tests, medications, and possible

diagnoses, the doctors settled on juvenile arthritis. When we intially saw the

rheumatologist at the end of May he said it was psoriatic arthritis, but her

skin remains perfect. We started with just naproxen, but on the first visit with

the rheumy he said that was not enough to calm the inflammation quickly so we

started a long course of prednisone and continued the naproxen. The prednisone

worked great, getting her within 10 degrees of her " normal. " At the end of

August we weaned off the prednisone and within 3 weeks she had lost nearly all

of her range of motion again. Back to the rheumy and he had us start MTX,

restart the prednisone, and continue the naproxen. In a short amount of time she

had her range of motion back and we were working with the OT on muscle

strengthening instead of increasing ROM. We weaned off the prednisone just after

the New Year and lo and behold, lost range of motion again. We saw her rhuemy

again about 2 weeks ago and he increased her MTX, continue current dose of

naproxen, and back on prednisone AGAIN! Each time she's gone back on the

prednisone, the side effects have been even worse than the time before. Now she

literally " bounces off the walls " and she's not regained any ROM yet either.

I've tried giving her coffee, but it just isn't working this time on prednisone.

Since the end of May she has also worn a specially made splint at night time to

keep her hand and wrist in a neutral position.

> I work as a Registered Nurse and have seen alot, but this is really getting to

be too much. I feel like we're chasing our tales and that our current " plan "

keeps putting us back to square one. There has to be something better out there.

My questions are this - should we pursue a second opinion? I know rheumy's are

in short supply from reading the AF's book about children with arthritis, but

I'm really starting to wonder. I'm so thankful we live in an area of the country

where there are 4 rheumy's within a reasonable driving distance (1-3 hours of

driving depending on which direction we go). Also, does anyone have any ideas to

help with the hyperactivity from the prednisone? Like I said, we've tried

coffee, and I really don't want to add another medication like ritalin, but I'm

afraid we're at that point as well. I'm wondering about the prednisone - I know

there are severe side effects and various complications from long term

prednisone (osteoporosis, diabetes, heart failure, etc), so when does it become

" just a wrist " and we no longer risk her life for it?

> Some of these questions are just me thinking out loud, but any ideas would be

greatly appreciated!

>