New To Group (long)

[Guest guest]

I have found this group right at a time that I am very frustrated

with everything related to JA.

My eight year old DD was diagnosed with juvenile

spondlyloarthropathy in 1999 however it took several years to

diagnose. In Sadie's case she has joint pain in her back, neck,

ankles, hands, jaw, sores in her mouth stomach upset, generalized

fatigue and other subtle signs, however no inflamation. She is

neither ANA or HLA-B27 positive.

We have been seeing a Ped. Rheum for about year and a half and he has

said he never sees any signs of inflamation, but to be prepared for a

Lupus Diagnosis later on.

Well our last visit was not a good one as far as repore. Sadie

always seems to be in quite alot of pain for her back and neck and it

is very localized. However she is a very busy child and has a touch

of ADD. (We have seen Dr's about ADD and they said she is not that

bad that she does not need to be medicated, and I agree.) However

our last visit this Dr. told me that if we get her ADD under control

that he bets her pain symptoms will go away. I got very upset

becuase I felt like he was saying that this was all in her head. I

reminded him that 2 Dr. had said that she did not need to be med for

ADD. He replied right in front of my child that we should get

another opinion because she never sits still in his office, she is

FAILING THE 2nd grade and he is not sure she has arthritis. Any Dr.

that says she does not need to be medicated is crazy. Of course he

recommended another Dr. to diagnose the ADD. I was quite pissed off

to say the least. That we would talk in front of my DD about

failing. We have never addressed her reading problems in this way,

and I felt it was quite insensative. Of all the meds she is on,

Vioxx, Azulphedine, Tylenol, Pepcid, the only that that seems to help

take the edge off a little is the Tylenol. And I keep asking why he

has her on all these inflammation drugs if she has none.

So here I stand with another referral to another Dr. for ADD, which I

will probably not go, and a Rheum that seems to of thrown his hands

up and is passing the buck. He seems to discount my DD pain since

their is no inflammation, but there is stiffness. Everyone one in my

family is healthy and she has never been subjected to complaining

that she would do this for attention, and quite frankly I know she is

is pain becuase I watch her.

I just don't know where to turn to next. There are no other Rheum in

this city and I would have to go to Houston, however my insurance

will not pay.

Sorry for such a long post.

Jeanine