Re: NEW MEMBER TO JRA

[Guest guest]

Hi, and welcome to the group. I am glad you found us, although sorry to

hear of another child with JRA. It sounds like your son has systemic

JRA. There are many folks here with young kids who also have that

diagnosis. My son was older when his arthritis appeared, first seeming

to be pauci JRA, but now being diagnosed with spondylitis. I mention

this just to let you know, there are many forms that JRA takes. You can

learn a lot here by reading the posts. Starting on an NSAID (non

steroidal anti inflammatory drug) like Motrin or Naproxen is fairly

common. They may continue to increase the doses (beyond anything you may

think is normal) and if it doesn't help they may add other stronger

drugs, DMARDS (disease modifying anti rheumatic drugs). It is great that

you are seeing a ped rheumy so quickly. I know it seems like a long time

when your child is in pain but some here have searched for over a year

before being diagnosed properly. For my son, it was 7 months from the

time the pain started until he saw a ped rheumy.

Please feel free to ask any questions you may have. The parents here are

quite knowledgeable and we all understand exactly what you are going

through. We all know that it's not " just arthritis " as some people would

say. This is a great place to vent when you need to and to share the

joys you will experience as things improve. Improving can and does

happen, but it does take time. Hugs to you and please post updates when

you can, Michele ( 18, spondy)

NEW MEMBER TO JRA

I am desperately in need of some comforting words. My 2 year old son

is suffering and this Thursday we are going to see a Pediatric

Rehumotologist. I am just so devasted. He's been on Motrin for a

month and because he's been on it for so long...it's not helping. All

I do is cry because being a " mom " I feel that I should be the one

making the pain go away. We've been dealing with this for a month and

at first he was diagnosed as having a viral infection. His fever

still hasn't gone away and his sedementation rate has been increasing

so therefore that tells us there's some inflammation in his body

somewhere. I just signed up to this group and hope that I can have

some peace of mind here. BTW now his pediatrician prescribed him with

NAPROXEN yesterday afternoon but it just doesn't seem to have kicked

in yet as he was up practically all night. I just want my " son " back

to his happy self :-(

[Guest guest]

CJB - Just read your post - I am so sorry that your son is ill. I have not

read all the replies but I know everyone will give great advice. It will

take some time for the Naproxen to really show some benefits. Hunter has taken

it for two years now. Please ensure that you son eats really good before

your give him the naproxen so it won't upset his tummy. And try not to let him

lay down for thirty minutes after the dose if you can help it. Also give

lots of fluids. Hang in there you will get the answers you need and he will

get

the right treatment. We are here if you need us. Sandi Ken Hunter

(Systemic 7)

[Guest guest]

CJB what part of the country do you live? What Rheumy are you seeing?

Sandi Ken Hunter (Systemic 7)

[Guest guest]

I can't imagine waiting 7 months to see a Ped Rheumy...once I get the actual

diagnosis of what my son has then I will be able to talk to others who share the

same disease. Yes Michele this is the place for me to share my thoughts and

feelings and thank you for the encouragement that things will get better as much

as I don't feel like it will at the moment. Does your son still have it? When

I tell people that my 2 year old could possibly have JRA they look at me like he

has some contagious disease. I will keep you posted on what the doctor says

about all his symptoms. CHRISTENE (ALEXANDER 2 YEARS OLD)

" Tepper, Michele " <MTepper@...> wrote: Hi, and welcome to the

group. I am glad you found us, although sorry to

hear of another child with JRA. It sounds like your son has systemic

JRA. There are many folks here with young kids who also have that

diagnosis. My son was older when his arthritis appeared, first seeming

to be pauci JRA, but now being diagnosed with spondylitis. I mention

this just to let you know, there are many forms that JRA takes. You can

learn a lot here by reading the posts. Starting on an NSAID (non

steroidal anti inflammatory drug) like Motrin or Naproxen is fairly

common. They may continue to increase the doses (beyond anything you may

think is normal) and if it doesn't help they may add other stronger

drugs, DMARDS (disease modifying anti rheumatic drugs). It is great that

you are seeing a ped rheumy so quickly. I know it seems like a long time

when your child is in pain but some here have searched for over a year

before being diagnosed properly. For my son, it was 7 months from the

time the pain started until he saw a ped rheumy.

Please feel free to ask any questions you may have. The parents here are

quite knowledgeable and we all understand exactly what you are going

through. We all know that it's not " just arthritis " as some people would

say. This is a great place to vent when you need to and to share the

joys you will experience as things improve. Improving can and does

happen, but it does take time. Hugs to you and please post updates when

you can, Michele ( 18, spondy)

NEW MEMBER TO JRA

I am desperately in need of some comforting words. My 2 year old son

is suffering and this Thursday we are going to see a Pediatric

Rehumotologist. I am just so devasted. He's been on Motrin for a

month and because he's been on it for so long...it's not helping. All

I do is cry because being a " mom " I feel that I should be the one

making the pain go away. We've been dealing with this for a month and

at first he was diagnosed as having a viral infection. His fever

still hasn't gone away and his sedementation rate has been increasing

so therefore that tells us there's some inflammation in his body

somewhere. I just signed up to this group and hope that I can have

some peace of mind here. BTW now his pediatrician prescribed him with

NAPROXEN yesterday afternoon but it just doesn't seem to have kicked

in yet as he was up practically all night. I just want my " son " back

to his happy self :-(

[Guest guest]

Hi, Christene. Yes, my son still has it. He is in a medicated remission

of sorts. When he takes his meds regularly (he is on methotrexate), he

has no symptoms. Now, he is going through a period where he is rather

non- compliant about the meds. It's one of my on going vents here on the

board and so he will have some swelling and back pain. The type of

arthritis he has is in the tendons a lot, which is where he now has most

of his problems. Again, if he would take the med better, I feel he would

have no problems. From what I understand, some teenagers go through

this. He began his at 13 (in his ankles), so we have been told he

probably will not outgrow it. It will always be of concern. I know that

others here, whose children were younger when it began, may outgrow it.

Usually when I say my son has arthritis people react with " Oh that's not

so bad. Everyone gets that " What they do not understand is that

arthritis in a child (or rheumatoid arthritis in an adult) is an auto

immune disease like diabetes. It is not osteoarthritis like many older

people get. It is so hard to see a young child unable to walk or run and

in pain. It is life altering. My son could not run for 2 years of his

life; it was too painful. Yet he continued to do sports and be as active

as possible, like the kids on this list. The kids here are real heroes

to me. They keep right on going, not letting this stop them. Once the

right " cocktail " , as we call it, of meds is found for your son, he will

begin to be able to move better. It may take time and the meds are often

strong ones, but the difference they make is often phenomenal. Also, one

thing to keep in mind - rheumatoid arthritis is a different disease than

JRA. Just because a child has JRA, does not mean that he will get RA as

an adult. As a matter of fact, my son's rheumy uses the initials JIA

(juvenile idiopathic arthritis) to differentiate between the two.

Michele ( 18, spondy)

RE: NEW MEMBER TO JRA

I can't imagine waiting 7 months to see a Ped Rheumy...once I get the

actual diagnosis of what my son has then I will be able to talk to

others who share the same disease. Yes Michele this is the place for me

to share my thoughts and feelings and thank you for the encouragement

that things will get better as much as I don't feel like it will at the

moment. Does your son still have it? When I tell people that my 2 year

old could possibly have JRA they look at me like he has some contagious

disease. I will keep you posted on what the doctor says about all his

symptoms. CHRISTENE (ALEXANDER 2 YEARS OLD)

[Guest guest]

Hi,

I am so sorry you are going though this. It is so devestating in the

begining. I am sure you will be overwelmed by all the infomation here,

theres soo much to learn and understand. But it does get better.

My son is 8 and systemic, he was dx 3 years ago. In wont lie to

you, its not been an easy road for us, but each case is different so you

just never know which cocktail of drugs and treatments will be the answer.

But I will tell you even with his flares over the years hes never been as

sick as he was in the begining.

Nick is on a ton of drugs and not all kids will need as many so dont be

scared of that..currently hes on Prednisone ( steriod ) indomethacin (

NSAID) methatrexate injection once a week (DMARD) remicade infusion, Iv in

hospital every 8 weeks but in process of doing these closer together

(biologic) folic acid to combat side effects of the MTX, Prilosec tummy

issues, zofran for nausea and of course mutli vitamins.

You are doing great to get into see a ped rheumatolgist so quickly, naprosyn

is pretty typically the first drug tried but it is slow acting so might take

awhile before you see a improvement. the dcotor might try a short term burst

of steriods to get rid of the fevers in the beginging. We all have such a

love hate relationship with prednisone, its a fantastic " band-aid " drug, and

works wonders, but its not a drug to take long term if you can avoid it.

usually if you go on prednisone they try and keep the duration to less than

2-4 weeks. Nick has been on pred for 2 years now, we have never been able to

taper him off of it because symptoms would return and he would flare once

the dose was decreased.

Well im sure i have gone on enough, some advise, keep a journal of when he

has fevers, how high they go, duration etc. record any joint issues you

might see etc. take pictures if you do see a rash as they rash can come and

go and might not always be there when you see the doctor. Another thing you

can do is read read read, educate yourself and read as much as you can about

JRA. Knowledge is power,

hang in there, it does get better. you have found the right place to hang

out, I wouldnt want to share this journey with anyone but the folks on this

list, they " get it " and are the most compasionate people you will ever

'meet "

let us know how it goes

hugs Helen and (8,systemic)

[Guest guest]

Christene,

Welcome to the group. So sorry to hear of your son's possible JRA. If you

are looking for a bit of a silver lining, it is that you have started off on

the right foot. You have a rheumy appt. quite soon into the start of your

son's symptoms and that you have found this group. It took 10 months

of long and very emotional searching to find a diagnosis for my daughter.

Her symptoms started the December before her 3rd birthday (in July). We

didn't get a diagnosis until the Sept. after she turned 3. She has

pauci-articular JRA (affects her left foot and ankle, right knee, and neck)

and JRA associated uveitis (in simplest terms... arthur of the eyes). I

didn't find this support until this past November-ish and my daughter

had been diagnosed for almost a year. I can't tell you how nice it is to

find others that share a similar experience after a year of feeling

isolated, scared, confused, angry, etc... It is bitter sweet. I certainly

don't want any child to suffer this terrible disease but I do want the

advice, encouraging words, and UNDERSTANDING from others that *actually know

* - not just imagine - what it is like to live mine and my daughter's lives.

I'm sure your head is swimming right now. It is a lot to process. We are

here to help. Others are better versed in the disease than I but there is a

tie that binds us all. We are here to give you what help we can... or just

listen.

To give you a better understanding of my daughter's experience w/ JRA, I'm

going to include a story I wrote that tells a little of what life is like

from her (Sophie's) perspective. After that, I'm including a description I

had written about our experiences from the day Sophie woke with her first

symptom to the day we actually got a diagnosis. You are also welcome to

visit the site Sophie has that keeps our family and friends updated on her

medical progress (www.caringbridge.org/visit/teamsophie). Read the journal

history for a look into the ups and downs we've had over the past year.

Good luck. My heart and hopes are with you and your son!

_______________

Sophie's story:

My name is Sophie. When I was two years old, I went to bed just fine but

woke with a stiff neck. My life would never be the same after that night. It

took 10 long and very emotional months as well as countless doctors visits,

Xrays, MRIs, CT scans, and blood tests to FINALLY be diagnosed with

pauciarticular juvenile rheumatoid arthritis (JRA) when I was 3 years

old. This

terrible disease affects my neck, left foot and ankle, as well as my right

knee.

I have had steroid injections directly into my foot, ankle, and knee to stop

the swelling and increase my mobility. I participated in rigorous physical

therapy both at Kosair Children's Hospital and at home to make me stronger

after having restricted movements for so long. And, I take lots of

medications as well as visit plenty of doctors a lot to try and combat the

painful effects of my arthritis.

I started out by taking Naproxen twice a day for pain management. That hurt

my tummy so I started taking Prevacid as well. (My joints are " quiet " right

now and I'm able to stop taking both of those.) I also take methotrexate

(mtx) once a week. This fights my autoimmune disorder by lowering my immune

system. It helps me by keeping the affected joints from attacking

themselves and causing an arthritic " flare " .

The down side is that in lowering my immune system, it takes me much longer

to get over any type of illness or injury. It also makes me unable to take

vaccinations that include the live virus. I get " vaccinated by the masses, "

meaning that my chances of coming into contact and contracting such a virus

is greatly reduced because the vast majority of other children have been

vaccinated. I take a vitamin with folic acid so that I don't get as many of

the negative side effects from the mtx such as mouth sores, hair loss, and

tummy aches.

It is such a strong drug that my doctor is afraid that other parts of my

body - like my liver - might be hurt by it. This is why I have to get my

blood taken every 6 weeks. Sometimes, I have it drawn more often if I'm in

a " flare " . Mama tells me it is a good thing because it lets everyone know

if I'm healthy or not.

I try to be brave but it is really tough when the needle stings me! I cry

and Mama holds me tight, wipes away my tears, blows my nose, and tells me

over and over that she loves me and that she is so proud of me. She says -

as she kisses my cheeks again and again - that I'm the bravest girl she

knows. I don't know if it is true but it makes me feel good anyway. It

also helps that (the nice lady that takes my blood) is so patient with

me and gives me so many stickers each time!

Louisville only has one pediatric rheumatologist that can treat my disease.

That limited choice forces me to have to drive almost 2 hours to see my

doctor in Indianapolis. She is at the Juvenile Arthritis Clinic in Riley

Hospital. We used to have to go there every 6 weeks. It is close to every

3 months now that my joints have quieted. Mama says they are worth the

drive because they are so knowledgeable and understanding with my jra.

I also have an eye disease that is associated with JRA that is called

uveitis. In simplest of terms, this is arthritis of my eyes. It is

something I will have for the rest of my life. My case is quite severe

because it affects all parts of both my eyes. I was told that damage is a

guarantee. We just won't know to what degree until it occurs.

Even though the diseases are associated, they are treated separately but in

cooperation with one another. For example, the mtx not only treats my

arthritis flares but also the flare ups of uveitis. The dosage can be

adjusted according to their severity.

Eye drops help when trying to keep my eyes " quiet " . I used to take 2

different steroid drops up to 6 times a day and 1 type that dilated my eyes.

I took this one because the calcium created by my uveitis flare (otherwise

known as band keratopathy) caused my pupils to stick. The bad news is that

the steroid drops also promote cataracts and glaucoma. The good news is

that they do work and have been successful at " quieting " the flare ups of

uveitis that I have experienced. I now take only 1 type of drop 4 times a

day. It is certainly one of my least favorite things but it isn't as bad as

having my blood taken. Dare I say that I have even gotten used to it?

My eyes have been very unstable since learning of my uveitis diagnosis. My

eye sight can go from 20/20 to 20/200 and back to 20/20 within 2 weeks

times. I am put on a high dose of oral steroids if my flare is really bad.

This is to hit hard the swelling in my eyes and hopefully keep them from

getting damaged. I know the medicine is supposed to help me but I just get

so sick of having to take so much stuff. The mood swings, increased

appetite, and rapid swelling/weight gain that the steroid causes is never

fun. Thankfully, it works pretty quickly and I'm able to get off of it

after a month or two.

As you can see from reading my story, it is tough to have jra and

uveitis. Each

new day brings with it uncertainty. Will I wake in pain? Will I have

another tummy ache? Will another joint become inflamed? Will my joints

that had been quiet flare again? Will my eyes swell? Will I be able to see

my family as clearly as I could the previous day? Will I have even more

medicine I have to choke down so I can keep up with other kids my age? Or,

will this be one of those good days that I like so much? I'm not sure but I

am brave enough to find out!

Please support me and others like me by participating in this year's

Arthritis Foundation Walk on June 17th at Slugger Field. TeamSophie is

always looking for people to walk with us and raise money for this worthy

cause. If you can't donate your time… your money is always welcomed!

Thank you for caring about me enough to read my story, get involved, and

give support! Keep reading below for a message from the Arthritis

Foundation.

________________

The diagnosis story:

My daughter, Sophie, is one of the loves of my life. She's compassionate,

adventurous, loving, intelligent, and vibrant. Sharing a life with Sophie

has brought me some of my most joy filled moments. Unfortunately,

terrifying moments also come with the package.

As Sophie grew, so did her love of the outdoors and of any type

of physical activity. She was always on the go! For this reason, I wasn't

too alarmed when she had gone to bed perfectly " normal " but had woken the

next morning with a stiff neck. She didn't complain of being in any pain. I

assumed she had pulled a muscle or something and was going to give it time

to correct itself.

Two weeks passed and nothing improved. She could turn her neck

about 20 degrees both ways. After that, her neck would stop moving by

itself and her entire upper body and shoulders would move with her as she

turned. I took her to see the pediatrician a week before Christmas 2003.

Thankfully, the doctor could see that something was wrong with

Sophie's neck movement. She just had no idea as to what was the cause. The

two doctors she brought in and consulted with were also clueless. We were

told to take Sophie home and watch for improvement or change for another

week. Christmas came and went while Sophie's neck troubles stayed the same.

We took her back to the pediatrician who still had no answers to give.

Instead,

we were referred to a physical therapist.

I had high hopes that this would be the person with some answers

as to why my daughter went over night from being such an active little girl

to barely being able to move her neck from side to side. That wasn't the

case. The physical therapist (PT) examined Sophie and couldn't find a

reason for her stiffness. Because he wasn't pediatric, he sent us in that

direction thinking a PT specializing in pediatrics might pick up on

something he missed. That also was not the case. That PT was as stumped as

the first. We were sent back to Sophie's pediatrician.

Once again, the pediatrician examined Sophie. I was angered

because the doctors were very complacent regarding Sophie's condition. It

was assumed that because she did not complain of being in pain, hers wasn't

a serious problem. They made blanket statements about waiting it out and

the problem possibly fixing itself and leaving as abruptly as it arrived. It

didn't seem to me that my daughter's health mystery was a top priority to

that pediatric office. I am paralyzed with fear when I think about what may

have happened if I would have left my daughter's care in their hands. The

doctors had no other advice for us than to give it time. That is when I

stepped up to the plate and made it my mission to find the cause to Sophie's

neck problems. We left that pediatric office and never returned.

I am very fortunate to have a husband that works outside of the

home so that I can stay at home as a full-time mother. At that time, Sophie

was our only child. I shutter to think just how long it may have taken to

get a diagnosis if I hadn't been able to literally devote all my time to

Sophie and the mystery of her neck. The next 8 months of our lives were

spent looking for answers.

Sophie saw countless specialists and had numerous tests run

during the time we searched for answers. I'm sure I won't cover them all

but here is a list of where our time was spent: We went through the First

Steps process to see if Sophie qualified for any assistance or physical

therapy. She did not since her difficulties didn't cause any developmental

delays. That coordinator suggested we see an ENT. Sophie's ENT was alarmed

at her lack of neck movement but felt it wasn't anything in his field of

expertise that was the cause. He suggested we see a pediatric orthopaedist.

We had an appointment with her, had X-rays taken of Sophie's neck and then

returned for a follow-up with that doctor. Since the X-rays showed nothing,

that doctor ordered an MRI and CT of Soph's neck and spine. When these

results were in, we were told – yet again – that no cause could be found. Next

came the pediatric neurosurgeon. He looked over all the films and past test

results and couldn't find anything which led to him ordering a few more

X-rays. Again, he found nothing that would cause Sophie's problems with her

neck.

By this time, we were supposed to follow up with the ENT who was shocked

that we hadn't found any answers. He suggested we see a pediatric

neurologist. During the time we had to wait for our appointment with the

neurologist, Sophie's left ankle started swelling. We took her to the

Immediate Care Center (it was a weekend, of course). They took X-rays,

found nothing to be broken, wrapped her ankle, said to stay off of it, and

sent us on our way. This turned out to be the best thing that could happen

for Sophie.

The pediatric neurologist recognized Sophie's symptoms (stiff

neck and especially the swollen ankle) as those of a possible Juvenile

Arthritis patient. He gave us the name of the ONLY PEDIATRIC RHEUMATOLOGIST

in Louisville as well as pulled a few strings to get us an appointment

fairly quickly. I had also been interviewing new pediatrician offices

during all of this and had found one I really liked. I took the information

the neurologist gave us, as well as all her old medical records to Sophie's

first appointment with the new pediatrician. He seemed to agree with the

previous doctor in that it looked as if we were dealing with Juvenile

Arthritis. He ordered another battery of blood tests which ultimately came

back showing that it truly was Juvenile Arthritis that had its clutches on

Sophie. It was suggested by her pediatrician that we travel north to

Indianapolis to the Juvenile Arthritis clinic at Riley Hospital. I was

reluctant to make the 2 hour drive if we could be seen and treated by a

doctor who was only 10 minutes from our home.

So, we kept our previously made appointment with Louisville's

pediatric rheumatologist. After looking over all of the past doctors'

notes, blood test result, and films from Sophie's X-rays, MRI and CT scan,

as well as examining her for himself, he confirmed that Sophie did have

Juvenile Rheumatoid Arthritis.

*FINALLY A DIAGNOSIS!*

After 10 long and emotion filled months, we finally had a name

for the mysterious beast that had taken hold of our daughter's neck and

ankle. I would love to have believed it was nothing and would go away on

its own. My heart and head knew that would never happen. So, it was time

to regroup and focus on the fight ahead of all of us!

I had some initial personality conflicts with the Louisville " rheumy " and

didn't feel that Sophie's need would be best served there. So, I took the

advice of my new pediatrician and took her up to Indy. After a thorough

exam and discussion with the Indy doctor, the original diagnosis was

confirmed. It was determined that Sophie had pauciarticular juvenile

rheumatoid arthritis.

It affected her neck, left foot and ankle, and right knee. She was

immediately prescribed naproxen, methotrexate, and physical therapy. We

also decided to go ahead with steroid injections directly into her left foot

and ankle as well as her right knee. To do this, they needed a clear

picture of all the tiny foot joints involved so we needed another MRI. We

were also told to get to a pediatric ophthalmologist as soon as we possibly

could.

The injections went very well. They quieted the joints almost immediately.

Sophie was much less grumpy, had more energy, and more mobility. Her neck

was longer to come around but after much PT and hard work on her part,

Sophie's neck has almost returned to normal. She still doesn't have full

range of motion but only a trained eye could pick that up.

The pediatric ophthalmologist appointment didn't go nearly as well. Sophie

did have JRA associated uveitis. She was found to have a pretty severe case

that affects all parts of both of her eyes. This is more commonly referred

to as panuveitis. She was put on heavy doses of oral steroids as well as 2

differing steroid eye drops and 1 drop for dilating her eyes. We were told

that ocular damage is a guarantee. We just won't know the severity until it

occurs.

I had never heard of juvenile rheumatoid arthritis before my daughter was

diagnosed with the disease. In fact, I had never even known they could have

arthritis. Now, I fight this disease daily - and for the rest of her life -

along with my daughter and husband. Each time Sophie goes to bed, I wonder

if she will wake in the morning with a new arthritis flare. Each night she

closes her eyes, I wonder if she will be able to see as clearly through them

the next time they open.

Though I would never let Sophie see, I'm scared and afraid. I'm scared that

her next flare might be crippling. I'm scared that my darling and precious

daughter's eyes will become permanently damaged at some point. I'm scared

that I will not have done enough to keep my daughter safe and well. However,

I'm afraid that not enough research is being done regarding JRA. What is

its cause? What is its course? What are its weaknesses? What is its cure?

I find it to be pathetic that it took 10 months and countless doctors and

tests before my daughter was diagnosed.

I'm afraid that the government might be as complacent as Sophie's first

pediatrician. The mentality of, " …if she doesn't complain then it must not

be too bad, " just doesn't cut it. It is bad. She is important. Something

must be done.

___________________

Sorry this has been so long but I thought it might help open a window into

the world of JRA. Please keep us updated as you continue your journey with

your son.

Weber

Profession Mom to:

Sophie 4 - pauci/panuveitis

Charlie 31 weeks - fussy but oh-so-lovable

teamsophie@...

On 2/28/06, Tepper, Michele <MTepper@...> wrote:

>

> Hi, Christene. Yes, my son still has it. He is in a medicated remission

> of sorts. When he takes his meds regularly (he is on methotrexate), he

> has no symptoms. Now, he is going through a period where he is rather

> non- compliant about the meds. It's one of my on going vents here on the

> board and so he will have some swelling and back pain. The type of

> arthritis he has is in the tendons a lot, which is where he now has most

> of his problems. Again, if he would take the med better, I feel he would

> have no problems. From what I understand, some teenagers go through

> this. He began his at 13 (in his ankles), so we have been told he

> probably will not outgrow it. It will always be of concern. I know that

> others here, whose children were younger when it began, may outgrow it.

> Usually when I say my son has arthritis people react with " Oh that's not

> so bad. Everyone gets that " What they do not understand is that

> arthritis in a child (or rheumatoid arthritis in an adult) is an auto

> immune disease like diabetes. It is not osteoarthritis like many older

> people get. It is so hard to see a young child unable to walk or run and

> in pain. It is life altering. My son could not run for 2 years of his

> life; it was too painful. Yet he continued to do sports and be as active

> as possible, like the kids on this list. The kids here are real heroes

> to me. They keep right on going, not letting this stop them. Once the

> right " cocktail " , as we call it, of meds is found for your son, he will

> begin to be able to move better. It may take time and the meds are often

> strong ones, but the difference they make is often phenomenal. Also, one

> thing to keep in mind - rheumatoid arthritis is a different disease than

> JRA. Just because a child has JRA, does not mean that he will get RA as

> an adult. As a matter of fact, my son's rheumy uses the initials JIA

> (juvenile idiopathic arthritis) to differentiate between the two.

> Michele ( 18, spondy)

>

> RE: NEW MEMBER TO JRA

>

> I can't imagine waiting 7 months to see a Ped Rheumy...once I get the

> actual diagnosis of what my son has then I will be able to talk to

> others who share the same disease. Yes Michele this is the place for me

> to share my thoughts and feelings and thank you for the encouragement

> that things will get better as much as I don't feel like it will at the

> moment. Does your son still have it? When I tell people that my 2 year

> old could possibly have JRA they look at me like he has some contagious

> disease. I will keep you posted on what the doctor says about all his

> symptoms. CHRISTENE (ALEXANDER 2 YEARS OLD)

>

>

>

>

>

>

[Guest guest]

My Two Cents. by Jo .

Just wanted to say how sorry I am to hear of yet another possible

diagnosis of JRA (we call it JIA here- Juvenile Idiopathic

Arthritis: Idiopathic meaning 'unknown')

My son was just 7 months old when he first became a human

pincushion, with blood tests first picking up Anaemia and some other

unknown inner disturbance.

He had his first full Flare- his left ankle- at 13 months, and was

finally, officially diagnosed with Pauciarticular JRA by a

Paediatric Rheumatologist at 19 months. It was promptly changed to

Extended Oligoarticular JIA as his initial first joint included 5

others by this official diagnosis.

I found out I was pregnant with our daughter literally the day

before Bayly's admittance to hospital, so couldn't even be there for

the X-rays, Bone scans, and other 'risky' tests.

Imagine my distress! Couldn't hold my baby boy, and was scared

witless that my unborn child would also 'get' this awful thing!!

You have already seen the support just waiting for you in this group

(BTW- outstanding post !). And for the simple fact that you are

here, please know that your son is blessed to have you for his mum.

As we are all blessed to have these kids in our lives.

We're also 3+ into this JIA journey, and I won't kid you- it is

still a hard road. But it has its hidden rewards. These people

amongst 'em.

I wish you well,

hugs from Australia,

Jo

Bayly, 3, extended oligo

>

> Christene,

>

> Welcome to the group. So sorry to hear of your son's possible

JRA. If you

> are looking for a bit of a silver lining, it is that you have

started off on

> the right foot. You have a rheumy appt. quite soon into the start

of your

> son's symptoms and that you have found this group. It took

10 months

> of long and very emotional searching to find a diagnosis for my

daughter.

> Her symptoms started the December before her 3rd birthday (in

July). We

> didn't get a diagnosis until the Sept. after she turned 3. She has

> pauci-articular JRA (affects her left foot and ankle, right knee,

and neck)

> and JRA associated uveitis (in simplest terms... arthur of the

eyes). I

> didn't find this support until this past November-ish and my

daughter

> had been diagnosed for almost a year. I can't tell you how nice

it is to

> find others that share a similar experience after a year of feeling

> isolated, scared, confused, angry, etc... It is bitter sweet. I

certainly

> don't want any child to suffer this terrible disease but I do want

the

> advice, encouraging words, and UNDERSTANDING from others that

*actually know

> * - not just imagine - what it is like to live mine and my

daughter's lives.

>

> Good luck. My heart and hopes are with you and your son!

> _______________

>

> Weber

> Profession Mom to:

> Sophie 4 - pauci/panuveitis

> Charlie 31 weeks - fussy but oh-so-lovable

> teamsophie@...

>

> >

[Guest guest]

Hello , welcome to the group and as the other have voiced so

sorry to hear your son is begining this journey, and really have a rough

time of it too.

I am a vet of JRA now having lived with it for 37 years since the age of

13 and though it seem like there is no light at the end of the tunnel,

don't dispare. Today there is far more medications available for the

treatment of jra and often we see the kids go into medicated remissions.

This is a hard time for you, especially so watching your little one

suffering so much and I know your are so very desperate to find answers.

You have found one of the MOST wonderfully supportive and knowledgeable

sites here. Ask of these wonderful peopl;e and for certain someone will

know of or where to find some kind of answer.

prayers for you and yours!

Rusty old one here!

[Guest guest]

Welcome ,

I agree with Rusty. I am 36 and had JRA since I was 3. My WHOLE body

including my eyes is affected. When I was dx all they did was put kids on

massive

doses of aspirin. The medical advancements today are amazing.

I am so sorry you have a reason to be here - but this is quite an awesome

room.

On a positive note, I have had JRA my whole life - but IT doesn't' have my

life. I am married (17 yrs in April) to Greg, have a HEALTHY 5 yr old daughter

Destiny. I am currently recovering from ankle fusion due to RA - (I got my

walking cast yesterday -can I say OUCH!!!!! walking after having 4 screws put in

and not walking for 7 weeks LOL ).

Anyway, welcome, keep us posted, and VENT all you need to. That's what we're

here for, Wishing your family all the blessings God has in store.

love, prayers and blessings,

(poly)

[Guest guest]

CJB - This disease can make them extremely pale. JRA does increase sleep

disorders. If we don't give Hunter her Naproxen every evening she will toss

and

turn until about 3 AM. Does your son has have night sweats? Our family

lives in Georgia and we use Emory University and Egleston Hospital for our

daughter's JRA issues. When you see the Rheumy - expect to give a long

interview

(or at least our's was). Try to write down questions or things that you are

worried about - when you get there to the appointment - it will ensure that

you don't forget certain questions. Also expect to have blood work done - the

Rhuemy will have to rule out a lot of other disease - good luck tomorrow.

Sandi Ken Hunter (7 Systemic)

[Guest guest]

I live in stown, NY. To all of you that have emailed me...thanks for your

comforting words...I am so glad I found this site. Can JRA cause such paleness

in your child? He's been white as a ghost ever since he's been having these

symptoms. I am counting the hours to see the Pediatric Rheumotologist tomorrow

morning at 9:30 a.m. is having a bad day today and oh another

question...he has not been sleeping good at all. Is this common in JRA? I just

want " answers " and hope that he able to outgrow this but it seems like systemic

JRA is something that stays with you forever. I am just so sad.

deerhuntert6@... wrote: CJB what part of the country do you live? What

Rheumy are you seeing?

Sandi Ken Hunter (Systemic 7)

[Guest guest]

Madison did not sleep well and would wake up SCREAMING 5 or 6 times a night and

then go back to sleep.

Ashlee (Madison, 3 ½, poly & iritis)

Re: NEW MEMBER TO JRA

I live in stown, NY. To all of you that have emailed me...thanks for your

comforting words...I am so glad I found this site. Can JRA cause such paleness

in your child? He's been white as a ghost ever since he's been having these

symptoms. I am counting the hours to see the Pediatric Rheumotologist tomorrow

morning at 9:30 a.m. is having a bad day today and oh another

question...he has not been sleeping good at all. Is this common in JRA? I just

want " answers " and hope that he able to outgrow this but it seems like systemic

JRA is something that stays with you forever. I am just so sad.

deerhuntert6@... wrote: CJB what part of the country do you live? What

Rheumy are you seeing?

Sandi Ken Hunter (Systemic 7)

[Guest guest]

I noticed at first he was having night sweats not now though. Because he

started off having high fever...I thought maybe his fever broke but like I said

before his pediatrician kept saying he had a viral infection. We just went out

for a little bit to my work to drop off a cake for one of my co-workers birthday

and just cried throughout the whole ordeal. Didn't want anybody to look at

him or touch him. I had to hold him the whole time. Before all this he would

associate with anybody that would come to him and do I not " cry " in front of my

co-workers. It's a bad day for us! I am trying not to beat myself up over

this. The more I talk on this...the more I know in my heart that he has this

disease and yet I don't want to accept it...does that make sense? I am trying

to tell myself it could have been worse. has had a lot of blood work done

already and just had one last week requested by another pediatrician that we

were referred to at a children's hospital. This

blood test I guess was to look more in depth of what the problem is...will find

out the results tomorrow I am sure. Does JRA stick with you forever? I haven't

heard many that " outgrew " it.

CHRISTENE

deerhuntert6@... wrote:

CJB - This disease can make them extremely pale. JRA does increase sleep

disorders. If we don't give Hunter her Naproxen every evening she will toss

and

turn until about 3 AM. Does your son has have night sweats? Our family

lives in Georgia and we use Emory University and Egleston Hospital for our

daughter's JRA issues. When you see the Rheumy - expect to give a long

interview

(or at least our's was). Try to write down questions or things that you are

worried about - when you get there to the appointment - it will ensure that

you don't forget certain questions. Also expect to have blood work done - the

Rhuemy will have to rule out a lot of other disease - good luck tomorrow.

Sandi Ken Hunter (7 Systemic)

[Guest guest]

Christene,

I know its so hard in the beginning and we all understand those days

of sadness and just wishing that things would return to " normal " .

You asked about paleness and yes my daughter would often have that

as well as dark circles under her eyes whenever she was feeling

particularly bad.

You also mentioned that he isn't sleeping well. We purchased a

heated mattress pad for our dtr and turned it on before she went to

bed. It helped some. She would also often take warm baths right

before bed and sometimes that would ease her joints enough to let

her fall off to sleep.

I want to end my response to you by giving you hope. My daughter is

10 and she was dx with systemic jra when she was 7 1/2. We went

thru our course of meds which I wont bore you with. She had flares

that were so bad she couldn't walk, dress herself, stand the weight

of a sheet on her skin or even lift a sandwhich to eat. We had to

carry her or use a roller chair just to take her to the bathroom.

She missed tons of school, especially in the winter and even had a

space at school just for her so she could go lay down whenever her

joints were bothering her.

Aundrea has now been off all meds for 3 months. She hasn't had a

significant flare since a year ago Feb. She was well controlled

with mtx for nearly a year and now she is med free and is currently

doing awesome. I don't know how long this remission will last and

of course were praying that it will be permanent. But, I want you

to have hope. Some stats will tell you that 50% of systemics can

achieve remission. Who knows what the real truth is on that, but

you have every reason to believe that there will be some medication

that will help and believe all of us when we say that the

beginning days are the toughest. You will cope and we are all here

for you!

(Aundrea 10 systemic jra)

-

-- In , Christene Breda <cjb_0117@...> wrote:

>

> I live in stown, NY. To all of you that have emailed

me...thanks for your comforting words...I am so glad I found this

site. Can JRA cause such paleness in your child? He's been white

as a ghost ever since he's been having these symptoms. I am

counting the hours to see the Pediatric Rheumotologist tomorrow

morning at 9:30 a.m. is having a bad day today and oh another

question...he has not been sleeping good at all. Is this common in

JRA? I just want " answers " and hope that he able to outgrow this

but it seems like systemic JRA is something that stays with you

forever. I am just so sad.

>

> deerhuntert6@... wrote: CJB what part of the country do you

live? What Rheumy are you seeing?

> Sandi Ken Hunter (Systemic 7)

>

>

>