A few questions about diagnosing JRA in kids.

[Guest guest]

Hello all,I just had some questions that hopefully you all could

help me answer.My daughter has been having problems a lot of low

grade temps and pains.She started having swelling in her left wrist

that came from nowhere.She was in my bed and I asked her to move

over and she did and started crying.We have been dealing with

illness in her since Nov 04 when she had an infection in her spine.I

gave her ice,but started thinking that she was over exaggerating the

next morning her wrist was purple and swollen.This happened the 16th

of Jan. We started seeing all sorts of doctors and each time they

would brace her arm for weeks on end and as soon as the brace came

off swelling again.Then she was casted 4 times and the same thing

happened and so she was sent to a pediatric orthopedist the same one

that treated her for her spinal infection.He said what the MRI

showed was swelling throughout and normally he would say it's

something called tinusinivitis(I know that's spelled wrong.) ,but

that mainly occurs in adults over 30 who do repetitive movements

with their wrists.Since she's only 11 and after hearing about all

her other symptoms he was thinking it could be JRA or something

autoimmune.We went to the Rheumatologist and they are thinking it

could be a few things as well,but so far nothing is showing up in

her blood.I don't understand this especially since there is such

noticeable swelling in her wrist.Have any of you had children that

were eventually diagnosed that didn't have anything show up in the

blood right away? Like elevated sed rate,crp or negative ANA? It's

just so frustrating.They did put her on a NSAID for now to see if

that will help her any and it does seem the swelling has come down

some with that,but we are just frustrated because we know somethings

going on but not sure what.Any help would be appreciated.God

bless,Linn

[Guest guest]

Linn,

There is no blood test that says yes or no JRA.Not even the SED rate, ANA or

rheumatoid factor.

It definately sounds like there is something rheumatic going on.Pediatric

rheumatologists are far and few in between and finding a great one can be even

harder to find.

I recommend a second opinion and to stop letting the orthos immobilze the

joints.

Start to keep a journal of when the pain occurs,early morning stiffness is a

biggie,what causes the pain,any fevers,rashes, and how bad it gets.You would

be surprised how much you forget when questioned.

Another thing is when giving family history.Almost all autoimmune diseases

lay on the same family branch.So it's not just who has arthritis,it could be

type 1 diabetes,throid problems,MS,dont know them all so just tell them

everything you know.Let the pros sort it out.

Diagnosis is made from symptoms,family history and blood tests even though

labs can be perfectly normal.

Hang in there and keep fighting for your child to get some answers.

Becki and 7 systemic

[Guest guest]

My son, Chase, had repeated bloodwork done when we were trying to get a

diagnosis. His sed rate, ANA, etc. all came back normal. He has Pauci JRA with

associated uveitis. He was dianosed 3 yrs. ago, and his sed rate still doesnt

show flags.

Hope this helps.

Deadra

linn98367 <gillinn7@...> wrote:

Hello all,I just had some questions that hopefully you all could

help me answer.My daughter has been having problems a lot of low

grade temps and pains.She started having swelling in her left wrist

that came from nowhere.She was in my bed and I asked her to move

over and she did and started crying.We have been dealing with

illness in her since Nov 04 when she had an infection in her spine.I

gave her ice,but started thinking that she was over exaggerating the

next morning her wrist was purple and swollen.This happened the 16th

of Jan. We started seeing all sorts of doctors and each time they

would brace her arm for weeks on end and as soon as the brace came

off swelling again.Then she was casted 4 times and the same thing

happened and so she was sent to a pediatric orthopedist the same one

that treated her for her spinal infection.He said what the MRI

showed was swelling throughout and normally he would say it's

something called tinusinivitis(I know that's spelled wrong.) ,but

that mainly occurs in adults over 30 who do repetitive movements

with their wrists.Since she's only 11 and after hearing about all

her other symptoms he was thinking it could be JRA or something

autoimmune.We went to the Rheumatologist and they are thinking it

could be a few things as well,but so far nothing is showing up in

her blood.I don't understand this especially since there is such

noticeable swelling in her wrist.Have any of you had children that

were eventually diagnosed that didn't have anything show up in the

blood right away? Like elevated sed rate,crp or negative ANA? It's

just so frustrating.They did put her on a NSAID for now to see if

that will help her any and it does seem the swelling has come down

some with that,but we are just frustrated because we know somethings

going on but not sure what.Any help would be appreciated.God

bless,Linn

[Guest guest]

Linn-

YES! This appears to happening to a lot of our kids: the blood tests come

back negative, but the symptoms all point to juvenile arthritis. My daughter

had very painful symptoms but the RH Factor was negative and the Sed Rate was

normal. The only initial blood test indicator which kept the pediatrician

pursuing this was her positive ANA. (However, we wouldn't have stopped even

if he had wanted to or if the ANA had been negative, because we KNEW something

was terribly wrong---we did have two orthopedic surgeons examine her. The

first one we saw ordered MRIs of her brain and her cervical spine, which came

back negative. When he saw the results, he was so happy that they were

negative, he told us " not to worry about it and come back in 6 months. " I

stood

firm with him, told him that maybe I hadn't been clear: " My daughter is 5

YEARS OLD. She has gone from an active, curious little girl who used to

follow me all over the house to sitting on the floor all day, wanting to do

nothing more than watch videos. She is stiff from the waist down, limps on her

right side and has regressed physically. This is NOT OKAY, and we cannot wait

6

months. " At which point, he told us to come back in 3 months. We got up,

walked out, and never went back to him.

We went to another orthoped. for a 2nd opinion, had more tests done, which

came back negative and when I pursued my belief with this dr, she agreed with

me, and said she too, believed it was not physiolgical in nature but rather

rheumatological or endocrinological in nature.

We went back to the pediatrician, and he agreed with us that we needed to

see a pediatric rheumatologist. Thank God we did, because our rheumatologist

is phenomenal, and has helped my daughter improve to about 100%.

I don't understand why some of the drs out there continue to let negative

test results trump the obvious physical/clinical symptoms, the reports of the

parent and often the child. I firmly believe that many blood tests are not up

to par, and are not indicating a problem that is obviously there.

You know your child better than anyone. Stand firm, listen to your gut AND

YOUR CHILD. Insist on consideration of an arthritis diagnosis and pursue it

from there.

Best wishes!

Beth

[Guest guest]

Beth that was very well said! How often is it that the focus

becomes about numbers and lab results instead of looking at the

whole picture and certainly the greatest clue that there is a

problem should come from the " child " themselves and how they present

and the course of change that has occured in their quality of life

etc...

How idiotic to look at a lab value or test and say " great everything

looks normal " . How wonderful that the paper impresses you but what

about the child that continues to limp, remain lethargic, etc...You

would like to say " does she/he look great too? or are we just going

to look at some paper with a lab value for the answer to that? "

I am glad that you have found a wonderful ped rheumy and that your

daughter is doing so much bettter under good care!

(aundrea 10 systemic jra)

>

> Linn-

> YES! This appears to happening to a lot of our kids: the blood

tests come

> back negative, but the symptoms all point to juvenile arthritis.

My daughter

> had very painful symptoms but the RH Factor was negative and the

Sed Rate was

> normal. The only initial blood test indicator which kept the

pediatrician

> pursuing this was her positive ANA. (However, we wouldn't have

stopped even

> if he had wanted to or if the ANA had been negative, because we

KNEW something

> was terribly wrong---we did have two orthopedic surgeons examine

her. The

> first one we saw ordered MRIs of her brain and her cervical

spine, which came

> back negative. When he saw the results, he was so happy that

they were

> negative, he told us " not to worry about it and come back in 6

months. " I stood

> firm with him, told him that maybe I hadn't been clear: " My

daughter is 5

> YEARS OLD. She has gone from an active, curious little girl who

used to

> follow me all over the house to sitting on the floor all day,

wanting to do

> nothing more than watch videos. She is stiff from the waist

down, limps on her

> right side and has regressed physically. This is NOT OKAY, and

we cannot wait 6

> months. " At which point, he told us to come back in 3 months.

We got up,

> walked out, and never went back to him.

>

> We went to another orthoped. for a 2nd opinion, had more tests

done, which

> came back negative and when I pursued my belief with this dr, she

agreed with

> me, and said she too, believed it was not physiolgical in nature

but rather

> rheumatological or endocrinological in nature.

>

> We went back to the pediatrician, and he agreed with us that we

needed to

> see a pediatric rheumatologist. Thank God we did, because our

rheumatologist

> is phenomenal, and has helped my daughter improve to about 100%.

>

> I don't understand why some of the drs out there continue to let

negative

> test results trump the obvious physical/clinical symptoms, the

reports of the

> parent and often the child. I firmly believe that many blood

tests are not up

> to par, and are not indicating a problem that is obviously

there.

>

> You know your child better than anyone. Stand firm, listen to

your gut AND

> YOUR CHILD. Insist on consideration of an arthritis diagnosis

and pursue it

> from there.

>

> Best wishes!

> Beth

>

>

>