Juvenile RA

[orchid]

I'm just curious if anyone knows anything about JRA? I knew a girl who had it when I was young, and I've read cases about other kids having it and the literature seem to stress that it is “different” than adult RA?

What is the difference, other than the age of onset? Do you believe it has the same cause (infection) and that it is started with some sort of trigger? It is so sad to read stories about kids with RA and I've read that they often outgrow it?

Are there still more girls than boys that get it? Considering a lot of kids develop JRA and haven't even gone through puberty confuses me, since hormones seem to play a role in adult RA — more women than men seem to develop the disease.

Just curious on your thoughts…

[Maz]

Hi Orchid,

Probably the best person to address all your questions would be Suzanne, as her young 'un has JRA and is she's pretty expert by now, as she's living it with her child affected.

I'm not too well-versed in JRA, as we don't get all that many parents on here searching for answers for their children, but you may be aware that JRA hit the headlines in the mid-70s when a mother, Polly Murray, contacted her health dept in Lyme, CT, because a growing cluster of children were all coming down with JRA. At the time, the physician at Yale who took on the investigation thought it was a virus until a patient came in with a tick in his hand and asked if the rash and arthritis he had could be due to this insect. Soon after, Willy Burgdorfer, a researcher, found that borrelia burgdorferi (and likely it's hitch-hiking coinfection friends) was the culprit – Lyme disease. This is one very well-documented infectious cause of JRA. 

Suzanne should be able to fill you in more. I believe she has found some information on brucella also being an infectious culprit?

Peace, Maz

[Suzanne]

[user=27]Maz[/user] wrote:

Suzanne should be able to fill you in more. I believe she has found some information on brucella also being an infectious culprit?

Peace, Maz

My daughter was first dx'd with brucellosis, then they said she didn't have it.

Kids, like adults, can get reactive arthritis from infections. In my daughter's case, they thought her arthritis was coming from an infection and treated her with abx, but when she “didn't get all the way better”, they said it was “just JRA”.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Suzanne]

[user=515]orchid[/user] wrote:

I'm just curious if anyone knows anything about JRA? I knew a girl who had it when I was young, and I've read cases about other kids having it and the literature seem to stress that it is “different” than adult RA?

What is the difference, other than the age of onset? Do you believe it has the same cause (infection) and that it is started with some sort of trigger? It is so sad to read stories about kids with RA and I've read that they often outgrow it?

Are there still more girls than boys that get it? Considering a lot of kids develop JRA and haven't even gone through puberty confuses me, since hormones seem to play a role in adult RA — more women than men seem to develop the disease.

Just curious on your thoughts…

I just saw on a Parents board that someone's child (age 14) had been dx'd with “adult RA” and not JRA.  I hadn't heard that before.

There are different kinds of JRA.  My daughter is polyarticular (more than five joints).  I think more girls are poly.  Systemic JRA causes high fevers and affects organs.  Pauciarticular, I think, is most common, like one big fat knee, and those kids seem to be the ones who outgrow it.  They take NSAIDS and get a few steriod injections and are good to go, it seems.  

It is common for kids to be seronegative.  Young children often do not express pain, and I'm told my daughter is in pain, she just doesn't express it.

Well, she certainly expressed it before they treated her for an infection.  She cried when we touched her.

Just from reading meesage boards, it seems like if girls go into remission when they hit puberty, it comes back really bad when they have a baby.

I will look for a concise link to post about JRA, in case I've misstated something!

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Suzanne]

Here is something:

http://www.rheumatology.org/public/factsheets/diseases_and_conditions/juvenilearthritis.asp?aud=pat

They are calling 'pauciarticular' oligoarticular in this article.  I've heard both, I'm not sure what or if there is a difference.

This article also says Lyme is one of the things that must be ruled out first.  Funny, the first ped rheums we saw never tested her for that, only the AP drs. we saw after she had been sick for over a year.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Tiff]

I have read on another message board about a mom looking for help for her 9 year old daughter.  She has been experiencing severe swollen throat (that is what started) and then wide spread joint pain, including the fingers/wrists.  The doctors have been hunting for the problem, but haven't nailed it down.  I immediately thought of JRA because I have had so much neck/throat/jaw involvement myself.  You would never think it would affect that area when it is a “joint disease.”  I think she has also had a rash (similar to 5th disease) and fever off and on.  I think they looked at JRA, but dismissed it.  Could they have been wrong?  And could Lyme disease show up with those type of symptoms?  Much to my horror, they have not yet even tried ABX, but if they did, it would likely be too little too late.  Should I post for her to check this site?  It is so terrible to deal with this with our kids.  Scares me to death!

[Suzanne]

[user=45]Tiff[/user] wrote:

I have read on another message board about a mom looking for help for her 9 year old daughter.  She has been experiencing severe swollen throat (that is what started) and then wide spread joint pain, including the fingers/wrists.  The doctors have been hunting for the problem, but haven't nailed it down.  I immediately thought of JRA because I have had so much neck/throat/jaw involvement myself.  You would never think it would affect that area when it is a “joint disease.”  I think she has also had a rash (similar to 5th disease) and fever off and on.  I think they looked at JRA, but dismissed it.  Could they have been wrong?  And could Lyme disease show up with those type of symptoms?  Much to my horror, they have not yet even tried ABX, but if they did, it would likely be too little too late.  Should I post for her to check this site?  It is so terrible to deal with this with our kids.  Scares me to death!

Well of course they could be wrong, but you really don't want a JRA dx, do you?  No cure.  It think it is good they are still looking.  If they don't find anything, they will come back to JRA, it is a dx of exclusion.

The throat part doesn't sound like JRA to me.  I've never heard anyone describe a swollen throat, only jaw pain.  That sounds like some type of infection, with fever and rash, so I would think they would try some abx if those symptoms don't go away.

I would at least ask if they have seen Infectious Disease.  Peds see common stuff, and ID looks harder for weird stuff.  How long has she been like this?  The mom might need to push to get another opinion.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Tiff]

[user=18]Suzanne[/user] wrote:

Well of course they could be wrong, but you really don't want a JRA dx, do you?  No cure.  It think it is good they are still looking.  If they don't find anything, they will come back to JRA, it is a dx of exclusion.

The throat part doesn't sound like JRA to me.  I've never heard anyone describe a swollen throat, only jaw pain.  That sounds like some type of infection, with fever and rash, so I would think they would try some abx if those symptoms don't go away.

I would at least ask if they have seen Infectious Disease.  Peds see common stuff, and ID looks harder for weird stuff.  How long has she been like this?  The mom might need to push to get another opinion.

Yes, that is so true!  That's the main reason I did not suggest anything.  Besides, others did mention it anyway.  It just struck me because I have had lots of throat issues, and not just my jaw.  Sometimes it feels like my tonsil (always one at a time, but both have done it) has swollen to the size of a golf ball, but it never really has, it just feels that way.  Swelling is always minimal visually for me though, anywhere.  But I have had throat issues, so I thought maybe it could present that way.  But that is part of the reason I suspect infection with all of this.  It seems like people have such different manifestations of the same disease.  It seems like different origins or focus point of infection.

Hopefully they will get to the bottom of it.  They did say today that they were seeing an infectious disease specialist.  I think it has been a couple of months already.  Poor dear.  I'll drop a note if I hear anything else.

Thanks, Suzanne!

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