When arthritis strikes children

[Guest guest]

When arthritis strikes children

Published March 28, 2006

http://washingtontimes.com/functions/print.php?StoryID=20060327-100328-9519r

Hill is looking for the key to unlock the mysteries of her disease.

The Baltimore native suffers from uveitis, a blinding complication of

juvenile rheumatoid arthritis. Although juvenile rheumatoid arthritis is an

autoimmune disease causing inflammation in joints, 's biggest struggle

right now is fighting the inflammation in her eyes.

In July 2005, 11-year-old began asking friends and relatives to

donate money to the Kids' Uveitis Research and Education Fund (KURE), which

supports research at the s Hopkins Wilmer Eye Institute in Baltimore. So

far, she has raised $50,000.

" There is a box, and it sits on a very high shelf. When you go to get

the box down from the shelf, you cannot reach it ..., " wrote in a

fundraising letter. " Only now do you notice the box is locked. ... You know,

deep in your heart, that all of the things you need to open the box will

arrive, when it is time. "

is trying to find a way to " open the box " and find a cure by

raising awareness about uveitis. She is hoping to help other children like

her who suffer from the condition. If caught early, the blindness associated

with uveitis usually can be controlled.

Ironically, 's eyes are one of her best features, says her mother,

Hope Hill.

" She has incredibly thick eyelashes, " Mrs. Hill says. " It's something

people compliment her about all the time. She has a hard time thanking them

because her eyes are also the bane of her existence. "

Since 's juvenile rheumatoid arthritis was diagnosed at 18 months,

doctors have been able to preserve her normal vision, says her father, Dr.

Hill, clinical director for the Department of Emergency Medicine at

s Hopkins Hospital in Baltimore. Her first flare of uveitis was caught

at age 4 during a monthly eye examination.

uses prednisolone acetate, steroid eye drops, five time a day. She

receives an injection on Fridays of methotrexate and takes cyclosporine by

mouth, also for eye inflammation.

She also underwent surgeries to prevent blindness from glaucoma, a

condition in which elevated pressure in the eye can result in loss of sight,

Dr. Hill says. She received shunts that allow for proper exit of the fluid

from the eye. The glaucoma is the result of the uveitis.

Because of her strict regimen, her eyesight is 20/15. When started

asking questions about uveitis and what the future holds, however, her

doctors were unable to give definitive answers because of limited

information, Dr. Hill says. He is hoping research through KURE will provide

more insight into uveitis in children.

Because juvenile rheumatoid arthritis is difficult to diagnose, there

hasn't been a major study on its prevalence or possible complications, such

as uveitis. The journal Arthritis and Rheumatism reported in 1998 that

50,000 children were suffering from juvenile rheumatoid arthritis.

The money is raising is seed money to develop a

government-sponsored multicenter study, Dr. Hill says.

" It's given her a sense of empowerment, " he says. " She can fight back

and do something for herself and others. It's given her a whole different

outlook of freedom. "

KURE is overseen by Dr. Jabs, professor of ophthalmology and

director of the division of ocular immunology at the Wilmer institute.

After 's diagnosis with juvenile rheumatoid arthritis, she visited

Dr. Jabs for regular eye screenings to see if she would develop uveitis. He

eventually diagnosed her with chronic anterior uveitis, which is

inflammation in the front of the eyes.

There are more than 25 types of uveitis, ranging in severity. The

condition can affect the anterior, middle and back parts of the eye or the

entire eye, and it is not always associated with juvenile rheumatoid

arthritis, he says.

In some types of uveitis, the eye is red, painful and light-sensitive,

he says. Other types feature blurred vision and eye floaters, little spots

floating in the vision. Still other versions, such as 's, are

asymptomatic at the outset.

Thirty years ago, more than one-third of children with uveitis that was

associated with juvenile rheumatoid arthritis ended up blind, Dr. Jabs says.

Now it's probably around 10 percent, he says. Two things have made a

difference: early detection and more aggressive therapy.

" Our goal is to try to reduce the 10 percent and get it down to zero, "

Dr. Jabs says. " We really would like to see no children go blind. "

After infection or trauma, the third cause of loss of vision, legal or

functional blindness is inflammatory eye disease causing scarring in the

uveal tract, according to the National Center for Health Statistics in

Hyattsville, says Dr. Sills, associate professor and director of

pediatric rheumatology at s Hopkins School of Medicine.

" It's totally preventable with attentive ophthalmologic care, " Dr. Sills

says. " Except at teaching centers, the majority of physicians who see young

people with joint disorders are unfamiliar with this. "

's pen pal, Aurelia Minuet Yong, 12, of Adelaide, Australia, was

diagnosed with juvenile rheumatoid arthritis and uveitis at the age of 2.

She lost the use of her left eye to glaucoma just after she turned 3. She

has no peripheral vision in her right eye because of the uveitis-caused

glaucoma.

" I can only ever remember being able to see through one of my eyes, "

Aurelia says via an e-mail interview. " Sometimes I feel off balance, and

when I am in strange places, I often knock into things. "

Aurelia, whose nickname is Lia, says she is glad has been able to

prevent blindness from glaucoma through her surgeries. Aurelia's mother,

Sorita Yong, discovered KURE while searching the Internet last fall.

" If I have to have a tube put into my eye, I would still be very scared

and nervous, but I would be comforted by 's success, " Aurelia says.

" It's fun to have an e-pal who knows what I'm going through. "

Michele Luczak of Owings Mills, Md., also is encouraged to know of

's perseverance. Her daughter Sydney Frid, 8, was diagnosed with

juvenile rheumatoid arthritis at 18 months. She had her first bout with

uveitis at age 4. She visits the eye doctor every three months and has

normal use of her eyes.

" Sydney doesn't know what life is like without arthritis, " Mrs. Luczak

says. " Whenever we have these checkups at the eye doctor, she is hesitant to

go. She is afraid of what he might say. To know there is another little girl

out there that is going through this is comforting to her. "

Despite any fears, Sydney has a good attitude about having the disease.

" It's not that hard actually, " she says. " Sometimes your joints hurt,

but when you're on medicine, it makes you better. It's like you don't even

notice that you have it. "

[Guest guest]

This is an article that has a lot of good info about JRA - Georgina

originally posted it last year. It has good info about blood tests in

it, I think, and the possibilities for outgrowing jra. Thought some of

you might find it interesting. Michele ( 19, spondy)

When Arthritis Strikes Children

When Arthritis Strikes Children

June 23

http://abcnews.go.com/Health/Healthology/story?id=876757 & CMP=OTC-RSSFeed

s0312

Only old people get arthritis, right?

There are many children who develop swollen fingers, knees and hands

from

juvenile rheumatoid arthritis (JRA), also known as juvenile idiopathic

arthritis (JIA). About one in 5,000 children suffer from JRA, which can

be

quite painful and if left unchecked, potentially crippling. Fortunately,

relatively new treatments have proven quite effective in controlling

this

disease.

Kathleen Haines, MD, section chief of pediatric immunology at Hackensack

University Medical Center, explains what options are available to keep

these

children active and pain-free.

What is JRA?

Juvenile rheumatoid arthritis is an umbrella term including at least

three

different diseases. They are all forms of arthritis that cause

inflammation

in the joints for six weeks or more. There is a small subset of young

patients with a rheumatoid arthritis that is similar to the adult

rheumatoid

arthritis, but most of the types are quite different.

To help distinguish JRA from adult arthritis, the term that is currently

being used is juvenile idiopathic arthritis (JIA). The official

designation

for either JRA or JIA means that the inflammation begins before age 16.

What causes JRA?

The assumption is that your immune system starts attacking joint tissue.

But

the why and how-and why in some people it affects only a few, rather

than

many joints-is completely unclear.

What are the different types of JRA?

First, there is pauciarticular, which involves four or fewer of the

larger

joints, most commonly the knees and ankles. This disease usually begins

before age 5, and the peak incidence is between the ages of two and

three.

Then there is a form called polyarticular arthritis that, while it has

its

onset before age 16, behaves like adult-pattern rheumatoid arthritis and

has

an immunologic marker called rheumatoid factor.

Third, and perhaps the hardest to take care of, is systemic-onset

juvenile

arthritis, which is associated with fevers, a rash and sometimes an

enlarged

liver, spleen or lymph nodes. There are fevers once or twice a day that

spike up and down. And the rash is also a fairly typical kind of rash

that

is seen at the time of the fever. Sometimes these patients don't even

have

arthritis at the beginning, and they are often diagnosed with a fever of

unknown origin until they eventually develop joint symptoms. While some

of

these kids respond very nicely to medication, there is a group that is

very

resistant to treatment.

Additionally, there is arthritis that is associated with psoriasis. This

arthritis is often a mix of one finger, one ankle, one knee or something

like that. These kids don't always have the skin condition psoriasis;

they

usually have some nail changes like " nail pitting. " This type of

arthritis

is inherited, so if the child has arthritis, those odd nails and a

relative

that has psoriasis, they may have psoriatic arthritis.

What are the symptoms of JRA?

Some of the kids have a significant amount of pain, and pain in the

joint

could be many other serious things that shouldn't be ignored. But more

often

than not, the kids are not complaining of pain. It's important to

realize

that the kids that usually wind up to have JRA have relatively little

pain

until you try to force them to straighten the leg or force them to bend

the

leg all the way. Then it hurts.

If the arthritis affects the legs, one common symptom is gait change.

They

do have a certain amount of pain when you examine them, but in real life

they may hold an affected knee slightly bent so it's more comfortable.

So

when you walk with your knee slightly bent, you will limp. The parents

will

often say, " They're walking like a little old man. "

How is the diagnosis of the type of JRA made?

When you see a pediatric rheumatologist, the visit is usually quite

long.

The doctor will need an extremely detailed history: " When did it start?

How

long? What time of day is the worst? "

Then you do an exam. You're looking for warmth, swelling and loss of

motion

in a joint. Then we do a few blood tests to see if the white blood cell

count is high, whether they are anemic, whether they have high platelet

levels-all of these are signs of inflammation.

However, children with pauciarticular juvenile arthritis often have

completely normal blood work. As a matter of fact, if the blood work is

very

abnormal, you start to doubt that diagnosis. Generally, pauciarticular

arthritis is diagnosed when the history fits, the pattern fits, the exam

fits, and we can't find any other reason-it's a diagnosis of exclusion.

There is also a test for rheumatoid factor, but that's positive only in

one

small subclass of patients. Ninety percent of kids with JRA have a

negative

rheumatoid factor, so we almost expect it to be negative. In fact, many

times, if the pattern of the arthritis doesn't look like it's rheumatoid

factor positive, the test isn't even done.

What can JRA be confused with?

Kids can get big, fat, swollen joints just after any kind of virus or

cold,

and even if they get Lyme disease. So, we first ask if the child has

been

sick or possibly in a tick-infested area.

What is a common treatment regimen for JRA?

Treatment depends upon both the type and the severity. There is no true

treatment algorithm that we all follow. So you may go to five different

rheumatologists, and you will probably get similar approaches, but not

necessarily identical ones.

If this has only started a week or two ago, and it hasn't been going on

for

six months already, I will start the child on a simple anti-inflammatory

drug, such as naproxen (Aleve) or ibuprofen (Advil, Motrin). But these

drugs

are prescribed at anti-inflammatory doses, which are much higher than

the

over-the-counter dose on the bottle and are given around the clock-it's

not

for pain, but to get rid of inflammation, and it can take four weeks or

more

to kick in.

After about four to six weeks, if they haven't made a lot of progress,

and i

t's a child that has pauciarticular juvenile arthritis with only one or

two

joints involved, the majority of pediatric rheumatologists recommend a

steroid shot directly into the joint. Almost all the children will

respond

immediately to this. But most of them will respond for only six months,

and

some will only respond for one month. For these children, you have to go

to

step three with them.

The next drug, methotrexate, is used if they either don't respond, the

response doesn't last long enough or they have too many joints involved

for

the shots (too many joints is up to the parent or the physician to

determine). While methotrexate is known as a cancer drug, at small doses

it

can reduce inflammation. It is given orally or injected at home, once a

week. Kids may sometimes feel nauseated the day after, but they are in

the

minority. Between 50 and 70 percent of kids will respond to

methotrexate.

Are the new biologic treatments effective for JRA?

Some doctors will, instead of using methotrexate, go right to one of the

newer biologics, like etanercept (Enbrel), which is approved for use in

children over four years of age. The big downside of entanercept, in my

opinion, is that it is only approved for twice-a-week injections, and it

cannot be given orally.

Do kids need to take these drugs for the rest of their lives?

That is an excellent question to which we have no answers. There really

have

been very few long-term studies, and many of the statistics we do have

are

from before we started to use methotrexate and the biologics.

The statistics that do exist show that if you have the pauciarticular

type

of juvenile rheumatoid arthritis, somewhere between 50 and 70 percent of

those kids will eventually outgrow it. If you have rheumatoid factor

negative polyarticular or systemic onset juvenile rheumatoid arthritis,

there is only between a 30 to 50 percent chance of you outgrowing it. If

you

have the rheumatoid factor positive type, the odds of that going away

are

extremely low, probably less than 10 percent. But that's the smallest

group,

so we don't have much long-term data. We have no data at all for

psoriatic

arthritis.

Is physical therapy helpful?

Physical therapy is extremely important, as well as occupational

therapy.

There is a lot of hand involvement with arthritis and the occupational

therapists try to maintain range of motion. Having a joint swollen and

being

held in a slightly flexed or bent position will cause tendon shortening,

so

even if the arthritis is completely under control, kids may not have

full

extension, and it is important to get full range of motion.

What is the outlook for families dealing with JRA?

We get better and better treatments every year. Back in the old days,

many

of these kids wound up in wheelchairs.

Today, most parents can assume that their children will lead a totally

normal life. The only difference is that they may have to remember to

take

some medication, as with any chronic disease. But these kids are going

to

run, play and jump just like the other kids.

[Guest guest]

Michele:

Awesome article. I will be printing a copy of this for shcool! Thank you so

much for sharing.

" Tepper, Michele " <MTepper@...> wrote:

This is an article that has a lot of good info about JRA - Georgina

originally posted it last year. It has good info about blood tests in

it, I think, and the possibilities for outgrowing jra. Thought some of

you might find it interesting. Michele ( 19, spondy)

When Arthritis Strikes Children

When Arthritis Strikes Children

June 23

http://abcnews.go.com/Health/Healthology/story?id=876757 & CMP=OTC-RSSFeed

s0312

Only old people get arthritis, right?

There are many children who develop swollen fingers, knees and hands

from

juvenile rheumatoid arthritis (JRA), also known as juvenile idiopathic

arthritis (JIA). About one in 5,000 children suffer from JRA, which can

be

quite painful and if left unchecked, potentially crippling. Fortunately,

relatively new treatments have proven quite effective in controlling

this

disease.

Kathleen Haines, MD, section chief of pediatric immunology at Hackensack

University Medical Center, explains what options are available to keep

these

children active and pain-free.

What is JRA?

Juvenile rheumatoid arthritis is an umbrella term including at least

three

different diseases. They are all forms of arthritis that cause

inflammation

in the joints for six weeks or more. There is a small subset of young

patients with a rheumatoid arthritis that is similar to the adult

rheumatoid

arthritis, but most of the types are quite different.

To help distinguish JRA from adult arthritis, the term that is currently

being used is juvenile idiopathic arthritis (JIA). The official

designation

for either JRA or JIA means that the inflammation begins before age 16.

What causes JRA?

The assumption is that your immune system starts attacking joint tissue.

But

the why and how-and why in some people it affects only a few, rather

than

many joints-is completely unclear.

What are the different types of JRA?

First, there is pauciarticular, which involves four or fewer of the

larger

joints, most commonly the knees and ankles. This disease usually begins

before age 5, and the peak incidence is between the ages of two and

three.

Then there is a form called polyarticular arthritis that, while it has

its

onset before age 16, behaves like adult-pattern rheumatoid arthritis and

has

an immunologic marker called rheumatoid factor.

Third, and perhaps the hardest to take care of, is systemic-onset

juvenile

arthritis, which is associated with fevers, a rash and sometimes an

enlarged

liver, spleen or lymph nodes. There are fevers once or twice a day that

spike up and down. And the rash is also a fairly typical kind of rash

that

is seen at the time of the fever. Sometimes these patients don't even

have

arthritis at the beginning, and they are often diagnosed with a fever of

unknown origin until they eventually develop joint symptoms. While some

of

these kids respond very nicely to medication, there is a group that is

very

resistant to treatment.

Additionally, there is arthritis that is associated with psoriasis. This

arthritis is often a mix of one finger, one ankle, one knee or something

like that. These kids don't always have the skin condition psoriasis;

they

usually have some nail changes like " nail pitting. " This type of

arthritis

is inherited, so if the child has arthritis, those odd nails and a

relative

that has psoriasis, they may have psoriatic arthritis.

What are the symptoms of JRA?

Some of the kids have a significant amount of pain, and pain in the

joint

could be many other serious things that shouldn't be ignored. But more

often

than not, the kids are not complaining of pain. It's important to

realize

that the kids that usually wind up to have JRA have relatively little

pain

until you try to force them to straighten the leg or force them to bend

the

leg all the way. Then it hurts.

If the arthritis affects the legs, one common symptom is gait change.

They

do have a certain amount of pain when you examine them, but in real life

they may hold an affected knee slightly bent so it's more comfortable.

So

when you walk with your knee slightly bent, you will limp. The parents

will

often say, " They're walking like a little old man. "

How is the diagnosis of the type of JRA made?

When you see a pediatric rheumatologist, the visit is usually quite

long.

The doctor will need an extremely detailed history: " When did it start?

How

long? What time of day is the worst? "

Then you do an exam. You're looking for warmth, swelling and loss of

motion

in a joint. Then we do a few blood tests to see if the white blood cell

count is high, whether they are anemic, whether they have high platelet

levels-all of these are signs of inflammation.

However, children with pauciarticular juvenile arthritis often have

completely normal blood work. As a matter of fact, if the blood work is

very

abnormal, you start to doubt that diagnosis. Generally, pauciarticular

arthritis is diagnosed when the history fits, the pattern fits, the exam

fits, and we can't find any other reason-it's a diagnosis of exclusion.

There is also a test for rheumatoid factor, but that's positive only in

one

small subclass of patients. Ninety percent of kids with JRA have a

negative

rheumatoid factor, so we almost expect it to be negative. In fact, many

times, if the pattern of the arthritis doesn't look like it's rheumatoid

factor positive, the test isn't even done.

What can JRA be confused with?

Kids can get big, fat, swollen joints just after any kind of virus or

cold,

and even if they get Lyme disease. So, we first ask if the child has

been

sick or possibly in a tick-infested area.

What is a common treatment regimen for JRA?

Treatment depends upon both the type and the severity. There is no true

treatment algorithm that we all follow. So you may go to five different

rheumatologists, and you will probably get similar approaches, but not

necessarily identical ones.

If this has only started a week or two ago, and it hasn't been going on

for

six months already, I will start the child on a simple anti-inflammatory

drug, such as naproxen (Aleve) or ibuprofen (Advil, Motrin). But these

drugs

are prescribed at anti-inflammatory doses, which are much higher than

the

over-the-counter dose on the bottle and are given around the clock-it's

not

for pain, but to get rid of inflammation, and it can take four weeks or

more

to kick in.

After about four to six weeks, if they haven't made a lot of progress,

and i

t's a child that has pauciarticular juvenile arthritis with only one or

two

joints involved, the majority of pediatric rheumatologists recommend a

steroid shot directly into the joint. Almost all the children will

respond

immediately to this. But most of them will respond for only six months,

and

some will only respond for one month. For these children, you have to go

to

step three with them.

The next drug, methotrexate, is used if they either don't respond, the

response doesn't last long enough or they have too many joints involved

for

the shots (too many joints is up to the parent or the physician to

determine). While methotrexate is known as a cancer drug, at small doses

it

can reduce inflammation. It is given orally or injected at home, once a

week. Kids may sometimes feel nauseated the day after, but they are in

the

minority. Between 50 and 70 percent of kids will respond to

methotrexate.

Are the new biologic treatments effective for JRA?

Some doctors will, instead of using methotrexate, go right to one of the

newer biologics, like etanercept (Enbrel), which is approved for use in

children over four years of age. The big downside of entanercept, in my

opinion, is that it is only approved for twice-a-week injections, and it

cannot be given orally.

Do kids need to take these drugs for the rest of their lives?

That is an excellent question to which we have no answers. There really

have

been very few long-term studies, and many of the statistics we do have

are

from before we started to use methotrexate and the biologics.

The statistics that do exist show that if you have the pauciarticular

type

of juvenile rheumatoid arthritis, somewhere between 50 and 70 percent of

those kids will eventually outgrow it. If you have rheumatoid factor

negative polyarticular or systemic onset juvenile rheumatoid arthritis,

there is only between a 30 to 50 percent chance of you outgrowing it. If

you

have the rheumatoid factor positive type, the odds of that going away

are

extremely low, probably less than 10 percent. But that's the smallest

group,

so we don't have much long-term data. We have no data at all for

psoriatic

arthritis.

Is physical therapy helpful?

Physical therapy is extremely important, as well as occupational

therapy.

There is a lot of hand involvement with arthritis and the occupational

therapists try to maintain range of motion. Having a joint swollen and

being

held in a slightly flexed or bent position will cause tendon shortening,

so

even if the arthritis is completely under control, kids may not have

full

extension, and it is important to get full range of motion.

What is the outlook for families dealing with JRA?

We get better and better treatments every year. Back in the old days,

many

of these kids wound up in wheelchairs.

Today, most parents can assume that their children will lead a totally

normal life. The only difference is that they may have to remember to

take

some medication, as with any chronic disease. But these kids are going

to

run, play and jump just like the other kids.

[Guest guest]

Glad it could help. I thought it explained things in a simpler way. I

have many articles that I have saved in an email folder over the years,

and every so often I find some info that I think bears repeating.

Georgina has posted so much to make us all more knowledgeable, that's

for sure! I have often forwarded things to family as well to help them

learn or if something touches on a struggle they may be having. Michele

________________________________

From: [mailto: ] On

Behalf Of Beth Yohnk

Sent: Thursday, August 17, 2006 11:50 AM

Subject: Re: FW: When Arthritis Strikes Children

Michele:

Awesome article. I will be printing a copy of this for shcool! Thank you

so much for sharing.

Beth Yohnk

Happy Thoughts..Be Well

[Guest guest]

Michele,

That was a great article and your right about it giving easily

understood explanations. Thanks for reposting it! :-)

(Aundrea 11 systemic jra)

>

> This is an article that has a lot of good info about JRA - Georgina

> originally posted it last year. It has good info about blood tests

in

> it, I think, and the possibilities for outgrowing jra. Thought

some of

> you might find it interesting. Michele ( 19, spondy)

>

> When Arthritis Strikes Children

>

> When Arthritis Strikes Children

> June 23

> http://abcnews.go.com/Health/Healthology/story?id=876757 & CMP=OTC-

RSSFeed

> s0312

>

> Only old people get arthritis, right?

>

> There are many children who develop swollen fingers, knees and

hands

> from

> juvenile rheumatoid arthritis (JRA), also known as juvenile

idiopathic

> arthritis (JIA). About one in 5,000 children suffer from JRA,

which can

> be

> quite painful and if left unchecked, potentially crippling.

Fortunately,

> relatively new treatments have proven quite effective in

controlling

> this

> disease.

>

> Kathleen Haines, MD, section chief of pediatric immunology at

Hackensack

> University Medical Center, explains what options are available to

keep

> these

> children active and pain-free.

>

> What is JRA?

> Juvenile rheumatoid arthritis is an umbrella term including at

least

> three

> different diseases. They are all forms of arthritis that cause

> inflammation

> in the joints for six weeks or more. There is a small subset of

young

> patients with a rheumatoid arthritis that is similar to the adult

> rheumatoid

> arthritis, but most of the types are quite different.

>

> To help distinguish JRA from adult arthritis, the term that is

currently

> being used is juvenile idiopathic arthritis (JIA). The official

> designation

> for either JRA or JIA means that the inflammation begins before

age 16.

>

> What causes JRA?

> The assumption is that your immune system starts attacking joint

tissue.

> But

> the why and how-and why in some people it affects only a few,

rather

> than

> many joints-is completely unclear.

>

> What are the different types of JRA?

> First, there is pauciarticular, which involves four or fewer of the

> larger

> joints, most commonly the knees and ankles. This disease usually

begins

> before age 5, and the peak incidence is between the ages of two and

> three.

>

> Then there is a form called polyarticular arthritis that, while it

has

> its

> onset before age 16, behaves like adult-pattern rheumatoid

arthritis and

> has

> an immunologic marker called rheumatoid factor.

>

> Third, and perhaps the hardest to take care of, is systemic-onset

> juvenile

> arthritis, which is associated with fevers, a rash and sometimes an

> enlarged

> liver, spleen or lymph nodes. There are fevers once or twice a day

that

> spike up and down. And the rash is also a fairly typical kind of

rash

> that

> is seen at the time of the fever. Sometimes these patients don't

even

> have

> arthritis at the beginning, and they are often diagnosed with a

fever of

> unknown origin until they eventually develop joint symptoms. While

some

> of

> these kids respond very nicely to medication, there is a group

that is

> very

> resistant to treatment.

>

> Additionally, there is arthritis that is associated with

psoriasis. This

> arthritis is often a mix of one finger, one ankle, one knee or

something

> like that. These kids don't always have the skin condition

psoriasis;

> they

> usually have some nail changes like " nail pitting. " This type of

> arthritis

> is inherited, so if the child has arthritis, those odd nails and a

> relative

> that has psoriasis, they may have psoriatic arthritis.

>

> What are the symptoms of JRA?

> Some of the kids have a significant amount of pain, and pain in the

> joint

> could be many other serious things that shouldn't be ignored. But

more

> often

> than not, the kids are not complaining of pain. It's important to

> realize

> that the kids that usually wind up to have JRA have relatively

little

> pain

> until you try to force them to straighten the leg or force them to

bend

> the

> leg all the way. Then it hurts.

>

> If the arthritis affects the legs, one common symptom is gait

change.

> They

> do have a certain amount of pain when you examine them, but in

real life

> they may hold an affected knee slightly bent so it's more

comfortable.

> So

> when you walk with your knee slightly bent, you will limp. The

parents

> will

> often say, " They're walking like a little old man. "

>

> How is the diagnosis of the type of JRA made?

> When you see a pediatric rheumatologist, the visit is usually quite

> long.

> The doctor will need an extremely detailed history: " When did it

start?

> How

> long? What time of day is the worst? "

>

> Then you do an exam. You're looking for warmth, swelling and loss

of

> motion

> in a joint. Then we do a few blood tests to see if the white blood

cell

> count is high, whether they are anemic, whether they have high

platelet

> levels-all of these are signs of inflammation.

>

> However, children with pauciarticular juvenile arthritis often have

> completely normal blood work. As a matter of fact, if the blood

work is

> very

> abnormal, you start to doubt that diagnosis. Generally,

pauciarticular

> arthritis is diagnosed when the history fits, the pattern fits,

the exam

> fits, and we can't find any other reason-it's a diagnosis of

exclusion.

>

> There is also a test for rheumatoid factor, but that's positive

only in

> one

> small subclass of patients. Ninety percent of kids with JRA have a

> negative

> rheumatoid factor, so we almost expect it to be negative. In fact,

many

> times, if the pattern of the arthritis doesn't look like it's

rheumatoid

> factor positive, the test isn't even done.

>

> What can JRA be confused with?

> Kids can get big, fat, swollen joints just after any kind of virus

or

> cold,

> and even if they get Lyme disease. So, we first ask if the child

has

> been

> sick or possibly in a tick-infested area.

>

> What is a common treatment regimen for JRA?

> Treatment depends upon both the type and the severity. There is no

true

> treatment algorithm that we all follow. So you may go to five

different

> rheumatologists, and you will probably get similar approaches, but

not

> necessarily identical ones.

>

> If this has only started a week or two ago, and it hasn't been

going on

> for

> six months already, I will start the child on a simple anti-

inflammatory

> drug, such as naproxen (Aleve) or ibuprofen (Advil, Motrin). But

these

> drugs

> are prescribed at anti-inflammatory doses, which are much higher

than

> the

> over-the-counter dose on the bottle and are given around the clock-

it's

> not

> for pain, but to get rid of inflammation, and it can take four

weeks or

> more

> to kick in.

>

> After about four to six weeks, if they haven't made a lot of

progress,

> and i

> t's a child that has pauciarticular juvenile arthritis with only

one or

> two

> joints involved, the majority of pediatric rheumatologists

recommend a

> steroid shot directly into the joint. Almost all the children will

> respond

> immediately to this. But most of them will respond for only six

months,

> and

> some will only respond for one month. For these children, you have

to go

> to

> step three with them.

>

> The next drug, methotrexate, is used if they either don't respond,

the

> response doesn't last long enough or they have too many joints

involved

> for

> the shots (too many joints is up to the parent or the physician to

> determine). While methotrexate is known as a cancer drug, at small

doses

> it

> can reduce inflammation. It is given orally or injected at home,

once a

> week. Kids may sometimes feel nauseated the day after, but they

are in

> the

> minority. Between 50 and 70 percent of kids will respond to

> methotrexate.

>

> Are the new biologic treatments effective for JRA?

> Some doctors will, instead of using methotrexate, go right to one

of the

> newer biologics, like etanercept (Enbrel), which is approved for

use in

> children over four years of age. The big downside of entanercept,

in my

> opinion, is that it is only approved for twice-a-week injections,

and it

> cannot be given orally.

>

> Do kids need to take these drugs for the rest of their lives?

> That is an excellent question to which we have no answers. There

really

> have

> been very few long-term studies, and many of the statistics we do

have

> are

> from before we started to use methotrexate and the biologics.

>

> The statistics that do exist show that if you have the

pauciarticular

> type

> of juvenile rheumatoid arthritis, somewhere between 50 and 70

percent of

> those kids will eventually outgrow it. If you have rheumatoid

factor

> negative polyarticular or systemic onset juvenile rheumatoid

arthritis,

> there is only between a 30 to 50 percent chance of you outgrowing

it. If

> you

> have the rheumatoid factor positive type, the odds of that going

away

> are

> extremely low, probably less than 10 percent. But that's the

smallest

> group,

> so we don't have much long-term data. We have no data at all for

> psoriatic

> arthritis.

>

> Is physical therapy helpful?

> Physical therapy is extremely important, as well as occupational

> therapy.

> There is a lot of hand involvement with arthritis and the

occupational

> therapists try to maintain range of motion. Having a joint swollen

and

> being

> held in a slightly flexed or bent position will cause tendon

shortening,

> so

> even if the arthritis is completely under control, kids may not

have

> full

> extension, and it is important to get full range of motion.

>

> What is the outlook for families dealing with JRA?

> We get better and better treatments every year. Back in the old

days,

> many

> of these kids wound up in wheelchairs.

>

> Today, most parents can assume that their children will lead a

totally

> normal life. The only difference is that they may have to remember

to

> take

> some medication, as with any chronic disease. But these kids are

going

> to

> run, play and jump just like the other kids.

>

>

>

>

>

>

[Guest guest]

Awesome article! Thanks! I too am printing it out for the school!! It puts

it in terms that are understandable to anyone!!

Thanks again!!

Jill & Kendra 11 jra

_____

From: [mailto: ] On Behalf

Of Tepper, Michele

Sent: Thursday, August 17, 2006 11:07 AM

Subject: FW: When Arthritis Strikes Children

This is an article that has a lot of good info about JRA - Georgina

originally posted it last year. It has good info about blood tests in

it, I think, and the possibilities for outgrowing jra. Thought some of

you might find it interesting. Michele ( 19, spondy)

When Arthritis Strikes Children

When Arthritis Strikes Children

June 23

http://abcnews.

<http://abcnews.go.com/Health/Healthology/story?id=876757 & CMP=OTC-RSSFeed>

go.com/Health/Healthology/story?id=876757 & CMP=OTC-RSSFeed

s0312

Only old people get arthritis, right?

There are many children who develop swollen fingers, knees and hands

from

juvenile rheumatoid arthritis (JRA), also known as juvenile idiopathic

arthritis (JIA). About one in 5,000 children suffer from JRA, which can

be

quite painful and if left unchecked, potentially crippling. Fortunately,

relatively new treatments have proven quite effective in controlling

this

disease.

Kathleen Haines, MD, section chief of pediatric immunology at Hackensack

University Medical Center, explains what options are available to keep

these

children active and pain-free.

What is JRA?

Juvenile rheumatoid arthritis is an umbrella term including at least

three

different diseases. They are all forms of arthritis that cause

inflammation

in the joints for six weeks or more. There is a small subset of young

patients with a rheumatoid arthritis that is similar to the adult

rheumatoid

arthritis, but most of the types are quite different.

To help distinguish JRA from adult arthritis, the term that is currently

being used is juvenile idiopathic arthritis (JIA). The official

designation

for either JRA or JIA means that the inflammation begins before age 16.

What causes JRA?

The assumption is that your immune system starts attacking joint tissue.

But

the why and how-and why in some people it affects only a few, rather

than

many joints-is completely unclear.

What are the different types of JRA?

First, there is pauciarticular, which involves four or fewer of the

larger

joints, most commonly the knees and ankles. This disease usually begins

before age 5, and the peak incidence is between the ages of two and

three.

Then there is a form called polyarticular arthritis that, while it has

its

onset before age 16, behaves like adult-pattern rheumatoid arthritis and

has

an immunologic marker called rheumatoid factor.

Third, and perhaps the hardest to take care of, is systemic-onset

juvenile

arthritis, which is associated with fevers, a rash and sometimes an

enlarged

liver, spleen or lymph nodes. There are fevers once or twice a day that

spike up and down. And the rash is also a fairly typical kind of rash

that

is seen at the time of the fever. Sometimes these patients don't even

have

arthritis at the beginning, and they are often diagnosed with a fever of

unknown origin until they eventually develop joint symptoms. While some

of

these kids respond very nicely to medication, there is a group that is

very

resistant to treatment.

Additionally, there is arthritis that is associated with psoriasis. This

arthritis is often a mix of one finger, one ankle, one knee or something

like that. These kids don't always have the skin condition psoriasis;

they

usually have some nail changes like " nail pitting. " This type of

arthritis

is inherited, so if the child has arthritis, those odd nails and a

relative

that has psoriasis, they may have psoriatic arthritis.

What are the symptoms of JRA?

Some of the kids have a significant amount of pain, and pain in the

joint

could be many other serious things that shouldn't be ignored. But more

often

than not, the kids are not complaining of pain. It's important to

realize

that the kids that usually wind up to have JRA have relatively little

pain

until you try to force them to straighten the leg or force them to bend

the

leg all the way. Then it hurts.

If the arthritis affects the legs, one common symptom is gait change.

They

do have a certain amount of pain when you examine them, but in real life

they may hold an affected knee slightly bent so it's more comfortable.

So

when you walk with your knee slightly bent, you will limp. The parents

will

often say, " They're walking like a little old man. "

How is the diagnosis of the type of JRA made?

When you see a pediatric rheumatologist, the visit is usually quite

long.

The doctor will need an extremely detailed history: " When did it start?

How

long? What time of day is the worst? "

Then you do an exam. You're looking for warmth, swelling and loss of

motion

in a joint. Then we do a few blood tests to see if the white blood cell

count is high, whether they are anemic, whether they have high platelet

levels-all of these are signs of inflammation.

However, children with pauciarticular juvenile arthritis often have

completely normal blood work. As a matter of fact, if the blood work is

very

abnormal, you start to doubt that diagnosis. Generally, pauciarticular

arthritis is diagnosed when the history fits, the pattern fits, the exam

fits, and we can't find any other reason-it's a diagnosis of exclusion.

There is also a test for rheumatoid factor, but that's positive only in

one

small subclass of patients. Ninety percent of kids with JRA have a

negative

rheumatoid factor, so we almost expect it to be negative. In fact, many

times, if the pattern of the arthritis doesn't look like it's rheumatoid

factor positive, the test isn't even done.

What can JRA be confused with?

Kids can get big, fat, swollen joints just after any kind of virus or

cold,

and even if they get Lyme disease. So, we first ask if the child has

been

sick or possibly in a tick-infested area.

What is a common treatment regimen for JRA?

Treatment depends upon both the type and the severity. There is no true

treatment algorithm that we all follow. So you may go to five different

rheumatologists, and you will probably get similar approaches, but not

necessarily identical ones.

If this has only started a week or two ago, and it hasn't been going on

for

six months already, I will start the child on a simple anti-inflammatory

drug, such as naproxen (Aleve) or ibuprofen (Advil, Motrin). But these

drugs

are prescribed at anti-inflammatory doses, which are much higher than

the

over-the-counter dose on the bottle and are given around the clock-it's

not

for pain, but to get rid of inflammation, and it can take four weeks or

more

to kick in.

After about four to six weeks, if they haven't made a lot of progress,

and i

t's a child that has pauciarticular juvenile arthritis with only one or

two

joints involved, the majority of pediatric rheumatologists recommend a

steroid shot directly into the joint. Almost all the children will

respond

immediately to this. But most of them will respond for only six months,

and

some will only respond for one month. For these children, you have to go

to

step three with them.

The next drug, methotrexate, is used if they either don't respond, the

response doesn't last long enough or they have too many joints involved

for

the shots (too many joints is up to the parent or the physician to

determine). While methotrexate is known as a cancer drug, at small doses

it

can reduce inflammation. It is given orally or injected at home, once a

week. Kids may sometimes feel nauseated the day after, but they are in

the

minority. Between 50 and 70 percent of kids will respond to

methotrexate.

Are the new biologic treatments effective for JRA?

Some doctors will, instead of using methotrexate, go right to one of the

newer biologics, like etanercept (Enbrel), which is approved for use in

children over four years of age. The big downside of entanercept, in my

opinion, is that it is only approved for twice-a-week injections, and it

cannot be given orally.

Do kids need to take these drugs for the rest of their lives?

That is an excellent question to which we have no answers. There really

have

been very few long-term studies, and many of the statistics we do have

are

from before we started to use methotrexate and the biologics.

The statistics that do exist show that if you have the pauciarticular

type

of juvenile rheumatoid arthritis, somewhere between 50 and 70 percent of

those kids will eventually outgrow it. If you have rheumatoid factor

negative polyarticular or systemic onset juvenile rheumatoid arthritis,

there is only between a 30 to 50 percent chance of you outgrowing it. If

you

have the rheumatoid factor positive type, the odds of that going away

are

extremely low, probably less than 10 percent. But that's the smallest

group,

so we don't have much long-term data. We have no data at all for

psoriatic

arthritis.

Is physical therapy helpful?

Physical therapy is extremely important, as well as occupational

therapy.

There is a lot of hand involvement with arthritis and the occupational

therapists try to maintain range of motion. Having a joint swollen and

being

held in a slightly flexed or bent position will cause tendon shortening,

so

even if the arthritis is completely under control, kids may not have

full

extension, and it is important to get full range of motion.

What is the outlook for families dealing with JRA?

We get better and better treatments every year. Back in the old days,

many

of these kids wound up in wheelchairs.

Today, most parents can assume that their children will lead a totally

normal life. The only difference is that they may have to remember to

take

some medication, as with any chronic disease. But these kids are going

to

run, play and jump just like the other kids.

[Guest guest]

Thanks so much for sending this out, I forwarded it to all my friends and

family--who don't really understand what's going on yet. Good idea for giving

the school a copy, I'll do that as well. thanks again!

Zack-10 poly, just diagnosed in March

Jill Hutslar <shutslar@...> wrote:

Awesome article! Thanks! I too am printing it out for the school!! It

puts

it in terms that are understandable to anyone!!

Thanks again!!

Jill & Kendra 11 jra

_____

From: [mailto: ] On Behalf

Of Tepper, Michele

Sent: Thursday, August 17, 2006 11:07 AM

Subject: FW: When Arthritis Strikes Children

This is an article that has a lot of good info about JRA - Georgina

originally posted it last year. It has good info about blood tests in

it, I think, and the possibilities for outgrowing jra. Thought some of

you might find it interesting. Michele ( 19, spondy)

When Arthritis Strikes Children

When Arthritis Strikes Children

June 23

http://abcnews.

<http://abcnews.go.com/Health/Healthology/story?id=876757 & CMP=OTC-RSSFeed>

go.com/Health/Healthology/story?id=876757 & CMP=OTC-RSSFeed

s0312

Only old people get arthritis, right?

There are many children who develop swollen fingers, knees and hands

from

juvenile rheumatoid arthritis (JRA), also known as juvenile idiopathic

arthritis (JIA). About one in 5,000 children suffer from JRA, which can

be

quite painful and if left unchecked, potentially crippling. Fortunately,

relatively new treatments have proven quite effective in controlling

this

disease.

Kathleen Haines, MD, section chief of pediatric immunology at Hackensack

University Medical Center, explains what options are available to keep

these

children active and pain-free.

What is JRA?

Juvenile rheumatoid arthritis is an umbrella term including at least

three

different diseases. They are all forms of arthritis that cause

inflammation

in the joints for six weeks or more. There is a small subset of young

patients with a rheumatoid arthritis that is similar to the adult

rheumatoid

arthritis, but most of the types are quite different.

To help distinguish JRA from adult arthritis, the term that is currently

being used is juvenile idiopathic arthritis (JIA). The official

designation

for either JRA or JIA means that the inflammation begins before age 16.

What causes JRA?

The assumption is that your immune system starts attacking joint tissue.

But

the why and how-and why in some people it affects only a few, rather

than

many joints-is completely unclear.

What are the different types of JRA?

First, there is pauciarticular, which involves four or fewer of the

larger

joints, most commonly the knees and ankles. This disease usually begins

before age 5, and the peak incidence is between the ages of two and

three.

Then there is a form called polyarticular arthritis that, while it has

its

onset before age 16, behaves like adult-pattern rheumatoid arthritis and

has

an immunologic marker called rheumatoid factor.

Third, and perhaps the hardest to take care of, is systemic-onset

juvenile

arthritis, which is associated with fevers, a rash and sometimes an

enlarged

liver, spleen or lymph nodes. There are fevers once or twice a day that

spike up and down. And the rash is also a fairly typical kind of rash

that

is seen at the time of the fever. Sometimes these patients don't even

have

arthritis at the beginning, and they are often diagnosed with a fever of

unknown origin until they eventually develop joint symptoms. While some

of

these kids respond very nicely to medication, there is a group that is

very

resistant to treatment.

Additionally, there is arthritis that is associated with psoriasis. This

arthritis is often a mix of one finger, one ankle, one knee or something

like that. These kids don't always have the skin condition psoriasis;

they

usually have some nail changes like " nail pitting. " This type of

arthritis

is inherited, so if the child has arthritis, those odd nails and a

relative

that has psoriasis, they may have psoriatic arthritis.

What are the symptoms of JRA?

Some of the kids have a significant amount of pain, and pain in the

joint

could be many other serious things that shouldn't be ignored. But more

often

than not, the kids are not complaining of pain. It's important to

realize

that the kids that usually wind up to have JRA have relatively little

pain

until you try to force them to straighten the leg or force them to bend

the

leg all the way. Then it hurts.

If the arthritis affects the legs, one common symptom is gait change.

They

do have a certain amount of pain when you examine them, but in real life

they may hold an affected knee slightly bent so it's more comfortable.

So

when you walk with your knee slightly bent, you will limp. The parents

will

often say, " They're walking like a little old man. "

How is the diagnosis of the type of JRA made?

When you see a pediatric rheumatologist, the visit is usually quite

long.

The doctor will need an extremely detailed history: " When did it start?

How

long? What time of day is the worst? "

Then you do an exam. You're looking for warmth, swelling and loss of

motion

in a joint. Then we do a few blood tests to see if the white blood cell

count is high, whether they are anemic, whether they have high platelet

levels-all of these are signs of inflammation.

However, children with pauciarticular juvenile arthritis often have

completely normal blood work. As a matter of fact, if the blood work is

very

abnormal, you start to doubt that diagnosis. Generally, pauciarticular

arthritis is diagnosed when the history fits, the pattern fits, the exam

fits, and we can't find any other reason-it's a diagnosis of exclusion.

There is also a test for rheumatoid factor, but that's positive only in

one

small subclass of patients. Ninety percent of kids with JRA have a

negative

rheumatoid factor, so we almost expect it to be negative. In fact, many

times, if the pattern of the arthritis doesn't look like it's rheumatoid

factor positive, the test isn't even done.

What can JRA be confused with?

Kids can get big, fat, swollen joints just after any kind of virus or

cold,

and even if they get Lyme disease. So, we first ask if the child has

been

sick or possibly in a tick-infested area.

What is a common treatment regimen for JRA?

Treatment depends upon both the type and the severity. There is no true

treatment algorithm that we all follow. So you may go to five different

rheumatologists, and you will probably get similar approaches, but not

necessarily identical ones.

If this has only started a week or two ago, and it hasn't been going on

for

six months already, I will start the child on a simple anti-inflammatory

drug, such as naproxen (Aleve) or ibuprofen (Advil, Motrin). But these

drugs

are prescribed at anti-inflammatory doses, which are much higher than

the

over-the-counter dose on the bottle and are given around the clock-it's

not

for pain, but to get rid of inflammation, and it can take four weeks or

more

to kick in.

After about four to six weeks, if they haven't made a lot of progress,

and i

t's a child that has pauciarticular juvenile arthritis with only one or

two

joints involved, the majority of pediatric rheumatologists recommend a

steroid shot directly into the joint. Almost all the children will

respond

immediately to this. But most of them will respond for only six months,

and

some will only respond for one month. For these children, you have to go

to

step three with them.

The next drug, methotrexate, is used if they either don't respond, the

response doesn't last long enough or they have too many joints involved

for

the shots (too many joints is up to the parent or the physician to

determine). While methotrexate is known as a cancer drug, at small doses

it

can reduce inflammation. It is given orally or injected at home, once a

week. Kids may sometimes feel nauseated the day after, but they are in

the

minority. Between 50 and 70 percent of kids will respond to

methotrexate.

Are the new biologic treatments effective for JRA?

Some doctors will, instead of using methotrexate, go right to one of the

newer biologics, like etanercept (Enbrel), which is approved for use in

children over four years of age. The big downside of entanercept, in my

opinion, is that it is only approved for twice-a-week injections, and it

cannot be given orally.

Do kids need to take these drugs for the rest of their lives?

That is an excellent question to which we have no answers. There really

have

been very few long-term studies, and many of the statistics we do have

are

from before we started to use methotrexate and the biologics.

The statistics that do exist show that if you have the pauciarticular

type

of juvenile rheumatoid arthritis, somewhere between 50 and 70 percent of

those kids will eventually outgrow it. If you have rheumatoid factor

negative polyarticular or systemic onset juvenile rheumatoid arthritis,

there is only between a 30 to 50 percent chance of you outgrowing it. If

you

have the rheumatoid factor positive type, the odds of that going away

are

extremely low, probably less than 10 percent. But that's the smallest

group,

so we don't have much long-term data. We have no data at all for

psoriatic

arthritis.

Is physical therapy helpful?

Physical therapy is extremely important, as well as occupational

therapy.

There is a lot of hand involvement with arthritis and the occupational

therapists try to maintain range of motion. Having a joint swollen and

being

held in a slightly flexed or bent position will cause tendon shortening,

so

even if the arthritis is completely under control, kids may not have

full

extension, and it is important to get full range of motion.

What is the outlook for families dealing with JRA?

We get better and better treatments every year. Back in the old days,

many

of these kids wound up in wheelchairs.

Today, most parents can assume that their children will lead a totally

normal life. The only difference is that they may have to remember to

take

some medication, as with any chronic disease. But these kids are going

to

run, play and jump just like the other kids.

[Guest guest]

Also mentions rheumatoid factor in children. Michele

When Arthritis Strikes Children

When Arthritis Strikes Children

June 23

http://abcnews.go.com/Health/Healthology/story?id=876757 & CMP=OTC-RSSFeeds0312

Only old people get arthritis, right?

There are many children who develop swollen fingers, knees and hands from

juvenile rheumatoid arthritis (JRA), also known as juvenile idiopathic

arthritis (JIA). About one in 5,000 children suffer from JRA, which can be

quite painful and if left unchecked, potentially crippling. Fortunately,

relatively new treatments have proven quite effective in controlling this

disease.

Kathleen Haines, MD, section chief of pediatric immunology at Hackensack

University Medical Center, explains what options are available to keep these

children active and pain-free.

What is JRA?

Juvenile rheumatoid arthritis is an umbrella term including at least three

different diseases. They are all forms of arthritis that cause inflammation

in the joints for six weeks or more. There is a small subset of young

patients with a rheumatoid arthritis that is similar to the adult rheumatoid

arthritis, but most of the types are quite different.

To help distinguish JRA from adult arthritis, the term that is currently

being used is juvenile idiopathic arthritis (JIA). The official designation

for either JRA or JIA means that the inflammation begins before age 16.

What causes JRA?

The assumption is that your immune system starts attacking joint tissue. But

the why and how-and why in some people it affects only a few, rather than

many joints-is completely unclear.

What are the different types of JRA?

First, there is pauciarticular, which involves four or fewer of the larger

joints, most commonly the knees and ankles. This disease usually begins

before age 5, and the peak incidence is between the ages of two and three.

Then there is a form called polyarticular arthritis that, while it has its

onset before age 16, behaves like adult-pattern rheumatoid arthritis and has

an immunologic marker called rheumatoid factor.

Third, and perhaps the hardest to take care of, is systemic-onset juvenile

arthritis, which is associated with fevers, a rash and sometimes an enlarged

liver, spleen or lymph nodes. There are fevers once or twice a day that

spike up and down. And the rash is also a fairly typical kind of rash that

is seen at the time of the fever. Sometimes these patients don't even have

arthritis at the beginning, and they are often diagnosed with a fever of

unknown origin until they eventually develop joint symptoms. While some of

these kids respond very nicely to medication, there is a group that is very

resistant to treatment.

Additionally, there is arthritis that is associated with psoriasis. This

arthritis is often a mix of one finger, one ankle, one knee or something

like that. These kids don't always have the skin condition psoriasis; they

usually have some nail changes like " nail pitting. " This type of arthritis

is inherited, so if the child has arthritis, those odd nails and a relative

that has psoriasis, they may have psoriatic arthritis.

What are the symptoms of JRA?

Some of the kids have a significant amount of pain, and pain in the joint

could be many other serious things that shouldn't be ignored. But more often

than not, the kids are not complaining of pain. It's important to realize

that the kids that usually wind up to have JRA have relatively little pain

until you try to force them to straighten the leg or force them to bend the

leg all the way. Then it hurts.

If the arthritis affects the legs, one common symptom is gait change. They

do have a certain amount of pain when you examine them, but in real life

they may hold an affected knee slightly bent so it's more comfortable. So

when you walk with your knee slightly bent, you will limp. The parents will

often say, " They're walking like a little old man. "

How is the diagnosis of the type of JRA made?

When you see a pediatric rheumatologist, the visit is usually quite long.

The doctor will need an extremely detailed history: " When did it start? How

long? What time of day is the worst? "

Then you do an exam. You're looking for warmth, swelling and loss of motion

in a joint. Then we do a few blood tests to see if the white blood cell

count is high, whether they are anemic, whether they have high platelet

levels-all of these are signs of inflammation.

However, children with pauciarticular juvenile arthritis often have

completely normal blood work. As a matter of fact, if the blood work is very

abnormal, you start to doubt that diagnosis. Generally, pauciarticular

arthritis is diagnosed when the history fits, the pattern fits, the exam

fits, and we can't find any other reason-it's a diagnosis of exclusion.

There is also a test for rheumatoid factor, but that's positive only in one

small subclass of patients. Ninety percent of kids with JRA have a negative

rheumatoid factor, so we almost expect it to be negative. In fact, many

times, if the pattern of the arthritis doesn't look like it's rheumatoid

factor positive, the test isn't even done.

What can JRA be confused with?

Kids can get big, fat, swollen joints just after any kind of virus or cold,

and even if they get Lyme disease. So, we first ask if the child has been

sick or possibly in a tick-infested area.

What is a common treatment regimen for JRA?

Treatment depends upon both the type and the severity. There is no true

treatment algorithm that we all follow. So you may go to five different

rheumatologists, and you will probably get similar approaches, but not

necessarily identical ones.

If this has only started a week or two ago, and it hasn't been going on for

six months already, I will start the child on a simple anti-inflammatory

drug, such as naproxen (Aleve) or ibuprofen (Advil, Motrin). But these drugs

are prescribed at anti-inflammatory doses, which are much higher than the

over-the-counter dose on the bottle and are given around the clock-it's not

for pain, but to get rid of inflammation, and it can take four weeks or more

to kick in.

After about four to six weeks, if they haven't made a lot of progress, and i

t's a child that has pauciarticular juvenile arthritis with only one or two

joints involved, the majority of pediatric rheumatologists recommend a

steroid shot directly into the joint. Almost all the children will respond

immediately to this. But most of them will respond for only six months, and

some will only respond for one month. For these children, you have to go to

step three with them.

The next drug, methotrexate, is used if they either don't respond, the

response doesn't last long enough or they have too many joints involved for

the shots (too many joints is up to the parent or the physician to

determine). While methotrexate is known as a cancer drug, at small doses it

can reduce inflammation. It is given orally or injected at home, once a

week. Kids may sometimes feel nauseated the day after, but they are in the

minority. Between 50 and 70 percent of kids will respond to methotrexate.

Are the new biologic treatments effective for JRA?

Some doctors will, instead of using methotrexate, go right to one of the

newer biologics, like etanercept (Enbrel), which is approved for use in

children over four years of age. The big downside of entanercept, in my

opinion, is that it is only approved for twice-a-week injections, and it

cannot be given orally.

Do kids need to take these drugs for the rest of their lives?

That is an excellent question to which we have no answers. There really have

been very few long-term studies, and many of the statistics we do have are

from before we started to use methotrexate and the biologics.

The statistics that do exist show that if you have the pauciarticular type

of juvenile rheumatoid arthritis, somewhere between 50 and 70 percent of

those kids will eventually outgrow it. If you have rheumatoid factor

negative polyarticular or systemic onset juvenile rheumatoid arthritis,

there is only between a 30 to 50 percent chance of you outgrowing it. If you

have the rheumatoid factor positive type, the odds of that going away are

extremely low, probably less than 10 percent. But that's the smallest group,

so we don't have much long-term data. We have no data at all for psoriatic

arthritis.

Is physical therapy helpful?

Physical therapy is extremely important, as well as occupational therapy.

There is a lot of hand involvement with arthritis and the occupational

therapists try to maintain range of motion. Having a joint swollen and being

held in a slightly flexed or bent position will cause tendon shortening, so

even if the arthritis is completely under control, kids may not have full

extension, and it is important to get full range of motion.

What is the outlook for families dealing with JRA?

We get better and better treatments every year. Back in the old days, many

of these kids wound up in wheelchairs.

Today, most parents can assume that their children will lead a totally

normal life. The only difference is that they may have to remember to take

some medication, as with any chronic disease. But these kids are going to

run, play and jump just like the other kids.

[Guest guest]

Wow...I was floored with the inaccuracy of their definition of Psoriatic

Arthritis! Amber and I would be just thrilled if it was just one joint or just

one knee! Amber has it in most joints to some degree, in her back, neck and

chest. I do wish they would accurately check there facts before putting

something like this out there. There is enough lack of understanding without

them playing a Psoriatic Arthritis down.

Sorry I just really needed to vent.

, Amber (16) Psoriatic

[Guest guest]

Part of it is, this is older info. The report was from 2005 I believe. We have

been personally dealing with this since 2000 and when I check some of the info I

kept from that time treatment has really changed. I was reading one where the dr

said they wait for at least six months before moving on from NSAID's. That is

how it was commonly treated just ten years ago. That's how it was for Chris.

Now I know that with many children the drs move right on to biologics. Things do

change and improve as time goes on.

I post the info I can find as a basic starting point, you might say. Some things

like blood tests are still pretty much the same. But this is another reason why

this list is so important - there is still outdated info out there, and even

some drs still follow it. By posting we can show that things are not always what

the " experts " say.

Thanks for putting it straight, Michele ( 23, spondy)

From: [mailto: ] On Behalf Of

URnotIM@...

Sent: Monday, December 13, 2010 2:43 PM

Subject: Re: FW: When Arthritis Strikes Children

Wow...I was floored with the inaccuracy of their definition of Psoriatic

Arthritis! Amber and I would be just thrilled if it was just one joint or just

one knee! Amber has it in most joints to some degree, in her back, neck and

chest. I do wish they would accurately check there facts before putting

something like this out there. There is enough lack of understanding without

them playing a Psoriatic Arthritis down.

Sorry I just really needed to vent.

, Amber (16) Psoriatic

[Guest guest]

Hi Michele,

Sorry about that! Actually I love all of the information you put out here for

us. I always feel some need to find out more. I guess it is just our first

instinct is to help our children and having your messages give us a direction to

go. I know many of the health care professionals along the way have asked us

what JRA is. I have to remember that the people in the ER, Physical Therapist or

whatever may have only learned exactly what is here. It is actually to the point

I carry my binder with her DX and all of the info involved with me everywhere.

Amber was actually just put on a biologic after one year. I was wondering why

it took so long and was going to ask the group if this is common.

Thank you so much for your info!!

[Guest guest]

No need to be sorry!! We are each just exchanging info. I just happen to be a

pack rat -LOL- and some of the info I have kept is definitely older. I just love

all the info that Georgina posts from time to time. She is so great at finding

these things. I have over the years saved articles I have found interesting or

that pertain to or my hubby and their symptoms.

As to the biologic, I think it is still more common for a dr to wait a bit and

try other DMARD's, most notably MTX, before moving on. But I have noticed in the

past ten years, that more drs are more aggressive sooner after diagnosis. Which

I personally think is a good thing, as delay might allow for joint damage.

Michele ( 23, spondy)

From: [mailto: ] On Behalf Of

URnotIM@...

Sent: Monday, December 13, 2010 3:33 PM

Subject: RE: FW: When Arthritis Strikes Children

Hi Michele,

Sorry about that! Actually I love all of the information you put out here for

us. I always feel some need to find out more. I guess it is just our first

instinct is to help our children and having your messages give us a direction to

go. I know many of the health care professionals along the way have asked us

what JRA is. I have to remember that the people in the ER, Physical Therapist or

whatever may have only learned exactly what is here. It is actually to the point

I carry my binder with her DX and all of the info involved with me everywhere.

Amber was actually just put on a biologic after one year. I was wondering why it

took so long and was going to ask the group if this is common.

Thank you so much for your info!!