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Re: not yet diagnosed

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Hi Debby,

It would be really wonderful if there was one specific test they could

perform to definitively define whether or not a person has JRA.

Unfortunately, there isn't. At least not yet. Various symptoms can mimic

lots of other illnesses, so they have to rule out what it isn't before

they can accurately diagnose what it is. To make things harder, certain

tests, like those that can signify inflammation (like the CRP & SED

rate), are not specific to arthritis. Other things can cause an elevated

result even if there's no arthritis present. And sometimes a person with

arthritis will not have an elevated count. Same with Rheumatoid factor.

Many children who do have arthritis will continue to have a negative

result for this test.

A large part of proper diagnosis depends upon a thorough physical exam

of the joints and extremities done by a rheumatologist. Preferably, a

pediatric rheumatologist. I think that's even more important than being

seen by an orthopedic specialist, though they do seem much harder to

find.

It's also important to arrange to have your daughter see an eye doctor.

Though the general public isn't often aware, there's a large correlation

between inflammatory eye conditions and rheumatological disease.

Sometimes this is present without any noticeable symptoms at all.

Sometimes it happens at the same time as joint problems, sometimes much

earlier ... or up to years later.

Time is also a factor. Like the doctors have said, sometimes these sorts

of problems will clear up within a brief time. Sometimes they don't. In

order for a diagnosis of JRA, I think it has to occur for a minimum of 6

weeks. Maybe it's longer?

So, while it does look like something is definitely going on, it's not

easy to know exactly what, especially in the early stages. By the way

.... how old is your daughter?

Aloha,

Georgina

dpatte2331@... wrote:

>

> Not yet diagnosed with JRA but our daughter seems to have quite a few

> symptons. Four weeks ago she woke up and was unable to walk her gait

> was very unsteady, falling into walls when she did walk.Finally she

> gave up and decided to stay in bed. We took her our local Children's

> Hospital E.R. where she was diagnosed with Toxic Synovitis (hip).We

> were told this would probably go away within a few days. Four weeks

> later she's still limping, mainly in the a.m. and after some physical

> activity.Although we have noticed she doesn't really seem to be as

> active before this started. Able to play for awhile then needs to

> rest.Her inflammation really only seems to be in the hip. I have

> noticed that she has lately been very sensitive to light and has been

> rubbing her eyes. Sometimes complains that it feels like something is

> in her eyes. We took her to her peditrician who told us she believes

> she was hit by a ball at school. Even though our daughter said she

> wasn't.We were told to see an orthopedic dr. and our now waiting for

> the appt. Some of her labs in the E.R. were:

>

> ESR -20

> CRP- 5.6

> WBC- 12.4

> ABS Monos - 1.30

> We were hoping someone would be able to tell us if these symptons

> were symptomatic to JRA.

> Thanks

> Debbie

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Hi Debbie:

If your daughter is complaining about her eyes, you should get her checked

for uveitis (spelling probably wrong - phonetically YOU-VEE- EYE-TIS ) right

away. There is a potentially serious complication of jra that can affect the

eyes. The test she needs is quick and easy - just a " split lamp test " - the

opthamologist just takes a quick look in her eyes and can tell right away, I

think. It's more of a problem with poly and pauci articular jra - and I

don't think the kids usually have any discomfort with it, which is why it

can be serious, so it may not be what is bothering your daughters eyes. BUT

- get it checked out as soon as you can if you suspect jra at all.

Lynn

From: dpatte2331@...

Reply-

Date: Sat, 30 Jun 2001 16:51:19 -0000

Subject: not yet diagnosed

Not yet diagnosed with JRA but our daughter seems to have quite a few

symptons. Four weeks ago she woke up and was unable to walk her gait

was very unsteady, falling into walls when she did walk.Finally she

gave up and decided to stay in bed. We took her our local Children's

Hospital E.R. where she was diagnosed with Toxic Synovitis (hip).We

were told this would probably go away within a few days. Four weeks

later she's still limping, mainly in the a.m. and after some physical

activity.Although we have noticed she doesn't really seem to be as

active before this started. Able to play for awhile then needs to

rest.Her inflammation really only seems to be in the hip. I have

noticed that she has lately been very sensitive to light and has been

rubbing her eyes. Sometimes complains that it feels like something is

in her eyes. We took her to her peditrician who told us she believes

she was hit by a ball at school. Even though our daughter said she

wasn't.We were told to see an orthopedic dr. and our now waiting for

the appt. Some of her labs in the E.R. were:

ESR -20

CRP- 5.6

WBC- 12.4

ABS Monos - 1.30

We were hoping someone would be able to tell us if these symptons

were symptomatic to JRA.

Thanks

Debbie

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I just wanted to say thank you to everyone who responded to the message I

posted. We are going to take Lacey to the opthamalogist for an eye exam. And

are looking into finding a juvenile rheumatologist in our area.

Debbie

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Debbie:

Check your local childrens hospital, they usually have one on staff or have

an idea of where you need to go for one. Best of luck.

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Clarice's SED rate was 20 when diagnosed with the synovitis, but it continued

to rise 5 points each day for three days after. Now it is back down to 10

which is the normal rate for children (so I have read). I have noticed some

parents posting some numbers that shocked me so I know it can get much higher

with the arhtritis. Best of luck to you.

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My daughter was diagnosed with systemic onset JRA 2 years ago. She is 7

years old and has had symptoms since age 3. Her sed rate were always elevated

between 30-70 . Sed rate is the sedimentation rate in the blood that measures

inflammation. Children with active JRA sometimes have sed rates that are

much higher. During a flare my daughter have been as high as 120 + . CRP or

c- reactive protein is another test that baffles me as well , I do know that

it is an indication of some JRA activity and our rheumatologist measures this

as well during flares and routine checks. Not being diagnosed is the hardest

time for parents, we know our precious babes are sick and not knowing is and

was the hardest time for us. A careful logbook of fevers , joint swelling,

rashes, and general unwellness can help the DR's make a diagnosis faster. You

are in my prayers, feel free to respond to me personally if you need any

further info about my personal situation. Lora

Mentorvic@...

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When my daughter was diagnosed, (12, systemic) her sed rate was

106. It has gone up & down quite a bit since then but the lowest was 72

in May. I don't anything more recent but she is still very active in

her disease and I know we can't expect anything to change overnight, not

drastically.

:)

Dayna M. Drennan

Project Based Services

SolutionsIQ

(425) 885-2780 Extension 2436

ddrennan@...

Re: not yet diagnosed

Clarice's SED rate was 20 when diagnosed with the synovitis, but it

continued

to rise 5 points each day for three days after. Now it is back down to

10

which is the normal rate for children (so I have read). I have noticed

some

parents posting some numbers that shocked me so I know it can get much

higher

with the arhtritis. Best of luck to you.

To manage your subscription settings, please visit:

For links to websites about JRA:

http://www.geocities.com/Heartland/Village/8414/Links.html

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CRP or C-Reactive Protein also indicates inflammation in the body. It is

quicker to return to normal than the Sed. Rate. Normal CRP is less than

1.0. The highest recorded for our daughter to date has been 24.2 on a day

when her fever was 106.8. Her sed rate was 138 on that same day.

I don't know about the other symptoms for colitis.

Hope this helps!!!

Angie

not yet diagnosed

>I was wondering if anyone could tell me what is considered an

>elevated sed rate and also an elevated CRP.Lacey's sed rate upon

>diagnosis of Toxic Synovitis was 20 and her CRP was 5.6

>Also are there any symptons to colitis?

>

>Lacey - 4 yrs. old

>Florida

>

>

>To manage your subscription settings, please visit:

>

>

>For links to websites about JRA:

>http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

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