Re: Systemic JRA Question

[Guest guest]

am,

When my son was going through the fever period, he had them at very

regular intervals, always in the evenings and/or around 2:00 am. He

would sometimes " chill " prior to the fever spiking, and then the

rash would usually follow the fever spike and would stay until

morning, then it would fade. He had no arthritis pain intially,

that came later.

I think getting an appointment with a good pediatric rheumatologist

would be a good idea at this point. I'm sorry to hear this is

starting again for your child.

>

> Hi,

>

> I've been a member for a long time, but don't post often. My

> daugther is now 4, but at 1 she got very sick with a really high

> fever, liver and spleen inflamation. After a month in the

hospital

> and many tests, they thought she probably had Systemic JRA but we

> never got an actual diagnosis because she didn't have the rash or

> arthritis/pain (as far as we could tell). She was put on steroids

> which brought everything back to normal. When she came off the

> steroids all together, she continued to get periodic fevers for

the

> next year or so. They came fairly often, but for short periods of

> time. They put her on naprosyn, which helped keep the fevers down

> and under control, but didn't get rid of them. The fevers

eventually

> got better - so we took her off of the naprosyn and she had her

last

> fever right after she turned 2. We stopped seeing the pediatric

> rheumatologists - they said it must have been something that

> triggered her immune system and its worked its way through. Now,

> fast forward 2 years, and for the last 4+ months she's started

having

> fevers every 5 weeks again - lasting 4 days, high of 103.5. We've

> done blood work and her sed rate and crp are very high. Again,

they

> are thinking something " rheumatological " is going on. She gets

the

> fever, but it comes down quickly with tylenol or motrin, until the

> next dose is due. She's generally fine during the fever episodes

> (except when the fever is peaking), and is fine right after its

> done.

>

> My question for those of you with experience with Systemic JRA is

> this. I've read that the fevers come and go. But has anyone

> experienced this - where they come at fairly regular intervals,

for

> the same number of days, etc. She still doesn't have a rash or

> complain of any pain, but I guess I'm just looking for some advice

on

> the pattern of the fever.

>

> Thanks for the advice. As I'm sure you can imagine, we are all in

> shock that we are dealing with this again and hope to find

> an " answer " !

>

> Thanks,

> am

>

[Guest guest]

Hi ,

Thanks for the response. We do have an appointment with a great

pediatric rheumatologists at Stanford (and we received second opinion

from a number of other folks as well), but at this point everyone is

stumpped, so I'm trying to gather as much info as I can ...

So, just to clarify, would the fevers come and go on regular

intervals (like they would last x number of days, every month)? The

fever my daughter had when she was 1 is like what described - a

spiking fever that would go up at the same time every day and would

last until it came down (with medicine making very little effect).

These fevers have not been that way - they stay the same all

day/night unless we give tylenol/motrin and then it comes down until

the 4/6 hours is up.

Thanks again for the help!

am

> >

> > Hi,

> >

> > I've been a member for a long time, but don't post often. My

> > daugther is now 4, but at 1 she got very sick with a really high

> > fever, liver and spleen inflamation. After a month in the

> hospital

> > and many tests, they thought she probably had Systemic JRA but we

> > never got an actual diagnosis because she didn't have the rash or

> > arthritis/pain (as far as we could tell). She was put on

steroids

> > which brought everything back to normal. When she came off the

> > steroids all together, she continued to get periodic fevers for

> the

> > next year or so. They came fairly often, but for short periods

of

> > time. They put her on naprosyn, which helped keep the fevers

down

> > and under control, but didn't get rid of them. The fevers

> eventually

> > got better - so we took her off of the naprosyn and she had her

> last

> > fever right after she turned 2. We stopped seeing the pediatric

> > rheumatologists - they said it must have been something that

> > triggered her immune system and its worked its way through. Now,

> > fast forward 2 years, and for the last 4+ months she's started

> having

> > fevers every 5 weeks again - lasting 4 days, high of 103.5.

We've

> > done blood work and her sed rate and crp are very high. Again,

> they

> > are thinking something " rheumatological " is going on. She gets

> the

> > fever, but it comes down quickly with tylenol or motrin, until

the

> > next dose is due. She's generally fine during the fever episodes

> > (except when the fever is peaking), and is fine right after its

> > done.

> >

> > My question for those of you with experience with Systemic JRA is

> > this. I've read that the fevers come and go. But has anyone

> > experienced this - where they come at fairly regular intervals,

> for

> > the same number of days, etc. She still doesn't have a rash or

> > complain of any pain, but I guess I'm just looking for some

advice

> on

> > the pattern of the fever.

> >

> > Thanks for the advice. As I'm sure you can imagine, we are all

in

> > shock that we are dealing with this again and hope to find

> > an " answer " !

> >

> > Thanks,

> > am

> >

>

[Guest guest]

am,

The fevers my son had lasted a few months, on and off. There was a

bout where they were like clock work, every evening and also around

2:00 am. He was diagnosed very quickly for JRA, some struggle for

so long to even get a diagnosis. So, once he was put on steroids

and then Methotrexate, the fevers stopped. He didn't have what you

are describing as a pattern over a certain number of days/months,

but like I said, he was put on meds fairly quickly which controlled

the fevers.

My experience has been that there are some patterns with JRA but

most won't follow a clear, concrete textbook path. We were told to

not worry about uvietis since he is systemic, well, sure enough he

had it. Have you read Dr. Lehman's book? I like it as a reference,

it's a good resource.

It sounds like you have a great doctor to go to, which will

hopefully bring you answers and treatment for your child. With the

elevated Sed and CRP, plus fevers it sure sounds familiar. Hang in

there, I know it's tough at times.

> > >

> > > Hi,

> > >

> > > I've been a member for a long time, but don't post often. My

> > > daugther is now 4, but at 1 she got very sick with a really

high

> > > fever, liver and spleen inflamation. After a month in the

> > hospital

> > > and many tests, they thought she probably had Systemic JRA but

we

> > > never got an actual diagnosis because she didn't have the rash

or

> > > arthritis/pain (as far as we could tell). She was put on

> steroids

> > > which brought everything back to normal. When she came off

the

> > > steroids all together, she continued to get periodic fevers

for

> > the

> > > next year or so. They came fairly often, but for short

periods

> of

> > > time. They put her on naprosyn, which helped keep the fevers

> down

> > > and under control, but didn't get rid of them. The fevers

> > eventually

> > > got better - so we took her off of the naprosyn and she had

her

> > last

> > > fever right after she turned 2. We stopped seeing the

pediatric

> > > rheumatologists - they said it must have been something that

> > > triggered her immune system and its worked its way through.

Now,

> > > fast forward 2 years, and for the last 4+ months she's started

> > having

> > > fevers every 5 weeks again - lasting 4 days, high of 103.5.

> We've

> > > done blood work and her sed rate and crp are very high.

Again,

> > they

> > > are thinking something " rheumatological " is going on. She

gets

> > the

> > > fever, but it comes down quickly with tylenol or motrin, until

> the

> > > next dose is due. She's generally fine during the fever

episodes

> > > (except when the fever is peaking), and is fine right after

its

> > > done.

> > >

> > > My question for those of you with experience with Systemic JRA

is

> > > this. I've read that the fevers come and go. But has anyone

> > > experienced this - where they come at fairly regular

intervals,

> > for

> > > the same number of days, etc. She still doesn't have a rash

or

> > > complain of any pain, but I guess I'm just looking for some

> advice

> > on

> > > the pattern of the fever.

> > >

> > > Thanks for the advice. As I'm sure you can imagine, we are

all

> in

> > > shock that we are dealing with this again and hope to find

> > > an " answer " !

> > >

> > > Thanks,

> > > am

> > >

> >

>

[Guest guest]

Hi am,

I am new to this group so still trying to figure things out myself.

Have they looked into Periodic Fever Syndromes? Since my daughter

was 1 she has been having strange, unexplained fevers. She was

given a diagnosis of Periodic Fever Syndrome (PFS) pending any new

developments. She has now developed arthritis in her toes.

in particular causes regular occurring fevers. PFS's will also

cause elevated SED rates and elevated CRP levels. I know how

frustrating it can be to find answers for your child but you may

want to do some research about the PFS's to see if they fit your

daughter. There is a ton of information on the web and there is

also a periodic fever syndrome group on .

Good luck!

Micah

Mom to (2.5)

> > > >

> > > > Hi,

> > > >

> > > > I've been a member for a long time, but don't post often.

My

> > > > daugther is now 4, but at 1 she got very sick with a really

> high

> > > > fever, liver and spleen inflamation. After a month in the

> > > hospital

> > > > and many tests, they thought she probably had Systemic JRA

but

> we

> > > > never got an actual diagnosis because she didn't have the

rash

> or

> > > > arthritis/pain (as far as we could tell). She was put on

> > steroids

> > > > which brought everything back to normal. When she came off

> the

> > > > steroids all together, she continued to get periodic fevers

> for

> > > the

> > > > next year or so. They came fairly often, but for short

> periods

> > of

> > > > time. They put her on naprosyn, which helped keep the

fevers

> > down

> > > > and under control, but didn't get rid of them. The fevers

> > > eventually

> > > > got better - so we took her off of the naprosyn and she had

> her

> > > last

> > > > fever right after she turned 2. We stopped seeing the

> pediatric

> > > > rheumatologists - they said it must have been something that

> > > > triggered her immune system and its worked its way through.

> Now,

> > > > fast forward 2 years, and for the last 4+ months she's

started

> > > having

> > > > fevers every 5 weeks again - lasting 4 days, high of 103.5.

> > We've

> > > > done blood work and her sed rate and crp are very high.

> Again,

> > > they

> > > > are thinking something " rheumatological " is going on. She

> gets

> > > the

> > > > fever, but it comes down quickly with tylenol or motrin,

until

> > the

> > > > next dose is due. She's generally fine during the fever

> episodes

> > > > (except when the fever is peaking), and is fine right after

> its

> > > > done.

> > > >

> > > > My question for those of you with experience with Systemic

JRA

> is

> > > > this. I've read that the fevers come and go. But has

anyone

> > > > experienced this - where they come at fairly regular

> intervals,

> > > for

> > > > the same number of days, etc. She still doesn't have a rash

> or

> > > > complain of any pain, but I guess I'm just looking for some

> > advice

> > > on

> > > > the pattern of the fever.

> > > >

> > > > Thanks for the advice. As I'm sure you can imagine, we are

> all

> > in

> > > > shock that we are dealing with this again and hope to find

> > > > an " answer " !

> > > >

> > > > Thanks,

> > > > am

> > > >

> > >

> >

>

[Guest guest]

my understanding is that it onsets suddenly and that it ca n turn into Poly

but it doesnt go in the reverse...

systemic is known to be explosive as ive heard it described....

On Mon, Feb 18, 2008 at 12:59 PM, rl_ahmgt <5063@...> wrote:

> Does Systemic JRA develop from Poly/Pauciarticular JRA or does it just

> onset suddenly?

>

>

>

--

" Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI-

Silver and Cold).

my Flight in life is a metamorphosis of growth and this flutter of wings is

within me awaiting to find a space to find it's flow...

[Guest guest]

JRA can present in many different ways and it is usually not completely diagosed

for six months. If you read about the three subsets pauci-poly and systemic they

are like three different diseases. They usually start you on a antiinflammatory.

Did they prescribe anything for her tummy. These drugs are hard on tummy. There

is a good site called www.kidsgetarthritistoo.com

There are some really nice moms on there that are really supportive and caring.

If that link doesn't work, write to me and I will look it up to make sure it is

right.

Take care,Cynde

Systemic JRA Question

Does Systemic JRA develop from Poly/Pauciarticular JRA or does it just

onset suddenly?

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[Guest guest]

systemic has different symptoms. Dr Lehmans book describes it. He says that to

be dianosed with systemic you have to have a high temp that always goes back to

normal everyday. It can effect internal organs including lymp system, heart, and

kidneys. The rash and temp are two of the tell tale signs but doctors are really

reluctant to diagnose it so it usually takes a while.

cynde

Re: Systemic JRA Question

my understanding is that it onsets suddenly and that it ca n turn into Poly

but it doesnt go in the reverse...

systemic is known to be explosive as ive heard it described....

On Mon, Feb 18, 2008 at 12:59 PM, rl_ahmgt <5063@...> wrote:

> Does Systemic JRA develop from Poly/Pauciarticular JRA or does it just

> onset suddenly?

>

>

>

--

" Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI-

Silver and Cold).

my Flight in life is a metamorphosis of growth and this flutter of wings is

within me awaiting to find a space to find it's flow...

[Guest guest]

I asked our doctor the same ? he would not give me a straight answer.

Sandi Ken and Hunter 9 Systemic

**************Ideas to please picky eaters. Watch video on AOL Living.

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/

2050827?NCID=aolcmp00300000002598)

[Guest guest]

Hi-

Issadora already covered this... and though there are many unknowns, I concur

that it's my understanding that systemic is generally an original onset.

Generally, kids may have just systemic symptoms (fevers, rash and organ

involvement) and then develop arthritis subsequently - or they develop all

symptoms at the same time. It's believed that systemic onset may become more

poly over time - that is, no more fevers or rash etc.... just multiple joint

arthritis.

Not sure if that helps....

Colleen (mom to Caitlin, 9, systemic JRA)

rl_ahmgt <5063@...> wrote:

Does Systemic JRA develop from Poly/Pauciarticular JRA or does it just

onset suddenly?

---------------------------------

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[Guest guest]

You've had some responses to this I believe, and I am behind as usual on my

posts - but I wanted to respond to this.? Based on my reading on this when my

son was first diagnosed, the systemic symptoms (organ involvement, high - cyclic

fevers, rash, etc.) can occur up to a year prior to any arthritic

symptoms(inflamed, painful or swollen joints, etc).??This of course is?part of

the reason that diagnosis is so difficult.

's arthritic and systemic symptoms seemed to have arrived hand in hand, so

to speak (though I am not convinced that?is the case).??'s

first?apparently related symptom was a painful knee, which he attributed to a

fall at preschool.??The first day of pain complaints there was

no?signs?of?injury.? The next day, upon picking him up at daycare?he had a

significant limp, pronounced swelling and increase in pain.? At the ER they

established there was fluid on the knee, not enough to require a " tap " -

recommended Motrin and a follow up in 10 days if not improved.? about 36?hours

later he awoke?screaming in pain -? " my arms, my arms " and a?fever over

104.??I?gave him Motrin and held him in my lap until early morning when I headed

to the hospital for him to see his pediatrician.??He walked into the hospital

doing the arthritis shuffle (refused to be carried because it hurt for him to be

touched - and didn't want to hold my hand when crossing the street because his

swollen hands hurt to be touched.)? They drew labs, did an exam and sent us home

with no clue what could be going on.? They called me?later that day because the

lab results were so bad, that he needed to be admitted.? Once there, they also

found?that the protein in his urine was elevated and?decided?he was having a

flare of his kidney disorder which had been diagnosed?a year earlier - although

none of?the symptoms were the same.? Treatment for the kidney disorder

is?steriods - so his symptoms diminished until?the taper of the steriods - they

then returned 10 times worse than before.? Two admissions later, with symptoms

of MAS and we had our diagnosis.

The reason that I say that I am not so sure that his symptoms came on all at

once is because I am not 100% convinced that his kidney disease/disorder

(Minimal Change Disease or MCD)?isn't related - although his?physicians all say

that they aren't. Like JRA (or JIA - hate changing the name - they should spend

the energy on other things like looking for tx options and possible cure) anyway

- like JRA, MCD is an autoimmune disorder and since Systemic Onset includes

organ involvement/inflammation that may have been the beginning.? Doesn't really

matter in the long run - either his onset was slower - with the kidneys

beginning the start of it, or it came on fast and furious with hard hitting

systemic and arthritic symptoms all at once.? I have read of cases were it came

on either way - though I don't recall reading of anyone having poly or pauci

diagnosed and then having systemic symptoms come on at a later date - though

I've been on this board long enough to know that anything is possible.

I hope this helps.?

Val (Rob's Mom, 10, systemic)

Systemic JRA Question

Does Systemic JRA develop from Poly/Pauciarticular JRA or does it just

onset suddenly?

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