JRA

[Guest guest]

Its a great website definitely go for it... I'll be sure to sign your

guestbook . Just go to caringbridge.org and click on create a website its

actually really easy surprisingly..

[Guest guest]

Hi Mother of Caidyn,

There are many parents of systemic jra children on theis list that

post frequently. I assume that is your diagnosis based on your

post. Many are doing OK and some are still some of the " sticky "

cases that just can't seem to find the right combination of meds.

yet that are relieving. If you have a question, just ask away.

Personally, we've been at it for almost 7 years but only diagnosed

and treated for 2 1/2 years. We are doing well at this moment.

Welcome and ask away.

Stacia and Hunter 9 systemic, iritis

>

> I have a 17 month old daughter named Caidyn who was diagnosed with

> JRA at the age of 13 months. I was taking her to our family

physician

> for months for a rash that just wouldn't go away and they kept

giving

> me creams for yeast infections. After about 5 or 6 months she

started

> having really high fevers especially at night time. Her rash also

> would worsen and almost look like a bullseye. (red circle with

white

> in the middle) I immediately took her into the emergency

department

> and they did several blood tests, and still could not figure out

what

> was going on and sent us to see a pediatrican at the same clinic

the

> next day. The pediatrician consulted with a wonderful Doctor named

> Dr.Marker, a infectious disease specialist at the Childrens

Hospital

> in Minneapolis. He was very concerned it was a disease called

> Kawasaki disease in which affects the heart. We immediately drove

her

> 40 minutes down to Childrens. He weighed the options and he wanted

to

> rule out Kawaski disease first, so she recieved globulins through

her

> IV. She never improved after that. So he tested her for leukemia.

> That was negative also. He then diagnosed her with JRA. After the

> horrifing ordeal with doctors, needles, x-rays, cat scans, ultra

> sounds, and tests, it was time to go home. About one week later we

> went back to see Dr.Marker. It was from that point on she has been

> recieving 5mls of Prednisolone every other day. Now she is back to

> the sweet innocent litte girl, I've wanted back for a long time.

We

> just recently noticed that she has the arthritis in her ankles and

> feet. It is very difficult for us to put shoes on her. I just have

> never been through something so terrible in my entire life. Just

the

> not knowing and the waiting. But now I am so relieved it isn't

> something life threating and can be treated but not cured. I would

> also like to know if anyone else's child had similar symptoms.

>

[Guest guest]

Your daughters story sounds a lot like my sons. Only diff was that he came

upon his very sudden. He was in the hospital for 13 days Feb. 05 and had

all these tests and the ID docs thought it was Kawasaki's also. Was treated

twice with that with no results. Finally our Ped. Said this isn't working

and he took over things and put him on aspirin and ib and set us up with a

Ped. Rheumy and sent us home. What a man....love my ped. Keep close watch

on the rash and fevers. They will come back at any time....it was 9 months

before he was hit hard with a major flare which he is still in. Any

questions just ask Hun.

~Lorilee~

Ken (Poly)

,Kayla

(Systemic)

-- JRA

I have a 17 month old daughter named Caidyn who was diagnosed with

JRA at the age of 13 months. I was taking her to our family physician

for months for a rash that just wouldn't go away and they kept giving

me creams for yeast infections. After about 5 or 6 months she started

having really high fevers especially at night time. Her rash also

would worsen and almost look like a bullseye. (red circle with white

in the middle) I immediately took her into the emergency department

and they did several blood tests, and still could not figure out what

was going on and sent us to see a pediatrican at the same clinic the

next day. The pediatrician consulted with a wonderful Doctor named

Dr.Marker, a infectious disease specialist at the Childrens Hospital

in Minneapolis. He was very concerned it was a disease called

Kawasaki disease in which affects the heart. We immediately drove her

40 minutes down to Childrens. He weighed the options and he wanted to

rule out Kawaski disease first, so she recieved globulins through her

IV. She never improved after that. So he tested her for leukemia.

That was negative also. He then diagnosed her with JRA. After the

horrifing ordeal with doctors, needles, x-rays, cat scans, ultra

sounds, and tests, it was time to go home. About one week later we

went back to see Dr.Marker. It was from that point on she has been

recieving 5mls of Prednisolone every other day. Now she is back to

the sweet innocent litte girl, I've wanted back for a long time. We

just recently noticed that she has the arthritis in her ankles and

feet. It is very difficult for us to put shoes on her. I just have

never been through something so terrible in my entire life. Just the

not knowing and the waiting. But now I am so relieved it isn't

something life threating and can be treated but not cured. I would

also like to know if anyone else's child had similar symptoms.

[Guest guest]

,

My daughter was about 18 months old when diagnosed. We took her to the

doctor thinking she had an ear infection because her balance was off. To find

out her knee was swollen. We went to an orthopedic doctor who thought it may be

arthritis and then referred to a pediatric rheumy for the official diagnosis of

pauci JRA.

Teri

lilsnugglesx3 <lilsnugglesx3@...> wrote:

Hey everyone,

Im , Im 20 I've had JRA since I was 18 mnths old.. I was

wondering who else got it at that age and how did you know there was

something wrong? I somehow ended up with a virus, then it lead to

arthritias, I had a flare up I always had a fever, My parents took me

to every doctor possible, even out of the state of new jersey, they

took me to the childrens delaware depont hospital, Im not sure how

many days I was admitted there but they couldnt find out what was

wrong with me. Well they thought I had tight hamstrengths which is a

tendon in the back of your knee, so they did surgery on me for that.

Come to find out thats not what I had, so all that was done for

nothing. Im here in this group, I want to know everyone elses

experiences.

* (20)

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

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starting at 1¢/min.

[Guest guest]

,

My daughter was also diagnosed at 18 months. After a visit to the

doctor for regular immunization, she started walking funny, wouldn't put her

toes down and she also was waking up at night screaming. Her fingers were also

swollen. After several dr. visits, xrays, bloodwork, etc. she was admitted to

the hospital for 2 days for further testing and more xrays. It was in the

hospital that the ped/ortho diagnosed her with polyarticular JRA.

She'll be 2 next month.

Kathy

Teri Hepworth <thep115@...> wrote:

,

My daughter was about 18 months old when diagnosed. We took her to the doctor

thinking she had an ear infection because her balance was off. To find out her

knee was swollen. We went to an orthopedic doctor who thought it may be

arthritis and then referred to a pediatric rheumy for the official diagnosis of

pauci JRA.

Teri

lilsnugglesx3 <lilsnugglesx3@...> wrote:

Hey everyone,

Im , Im 20 I've had JRA since I was 18 mnths old.. I was

wondering who else got it at that age and how did you know there was

something wrong? I somehow ended up with a virus, then it lead to

arthritias, I had a flare up I always had a fever, My parents took me

to every doctor possible, even out of the state of new jersey, they

took me to the childrens delaware depont hospital, Im not sure how

many days I was admitted there but they couldnt find out what was

wrong with me. Well they thought I had tight hamstrengths which is a

tendon in the back of your knee, so they did surgery on me for that.

Come to find out thats not what I had, so all that was done for

nothing. Im here in this group, I want to know everyone elses

experiences.

* (20)

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

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

[Guest guest]

Hi - my daughter " T " was diagnosed with JRA (Pauciarticular)

at the age of 1. She dd have a fever about the time of the onset but

she also fell on a toy on her knee which my hisband refuses to rule

out as a catalyst. She has had Pauci all this time until this past

summer when it seems to be turning into Poly and has become very

active over the past two months. I'm curious that now that you're 20,

what you have been experiencing throughout the years? The drs keep

telling me that " T " will " outgrow " this condition but now that I have

seen how quickly it can become active, I think she will be dealing

with it for a long time. " T " has been through years of medicine,

(Sulfasalazine, Enbrel, NSAID's) etc and has had PT for most of her

life as well (she's now 9). I think her current struggle will be her

hardest so far since it seems to have spread.........We first noticed

a lump on T's knee and took her to an orthopedist who aspirated it.

That was when she stopped walking, which she had only been doing for a

few months. Then after an MRI and some major lab work we were able to

rule out various other diseases and ended up with the JRA diagnosis.

At 9, she now has hip displaysia and a slight problem with her

affected leg. She toes in on the left side, semmingly because that leg

has always been longer than her right leg due to the arthritis. We

have been told to wait until her growing stops before we can really do

anything about all that. She's back in PT and getting ready to start

Enbrel again. Hope this helps you out. Best wishes to you!

>

> Hey everyone,

> Im , Im 20 I've had JRA since I was 18 mnths old.. I was

> wondering who else got it at that age and how did you know there was

> something wrong? I somehow ended up with a virus, then it lead to

> arthritias, I had a flare up I always had a fever, My parents took

me

> to every doctor possible, even out of the state of new jersey, they

> took me to the childrens delaware depont hospital, Im not sure how

> many days I was admitted there but they couldnt find out what was

> wrong with me. Well they thought I had tight hamstrengths which is a

> tendon in the back of your knee, so they did surgery on me for that.

> Come to find out thats not what I had, so all that was done for

> nothing. Im here in this group, I want to know everyone elses

> experiences.

> * (20)

>

[Guest guest]

Hi, ,

My daughter was diagnosed when she was 22 months old.

But looking back, I realize that there were many

indicators apparent even in her infancy. She would

always be crying when she woke up from a nap or in the

morning (and not just fussing). She would cry when I

would bend her knee to get her legs in and out of

blanket sleepers in the early mornings. She would

wake up in the middle of car rides screaming and

inconsolable for at least 20 minutes. She would

scream and cry when I would try to get her to bend her

knee to get her in and out of a highchair. These were

all things that I noticed were VERY different from my

other two children. She never did really crawl . . .

she would be on her hands and one knee and drag the

other leg (I just thought that different kids crawl

differently, so I wasn't concerned about that). But

when she began walking, we really noticed a limp (not

all the time, but usually after a nap and in the

mornings. That occasionally limp was what prompted us

to talk to the family doctor at her 15-month-old check

up. He examined her well but couldn't pinpoint any

major problem, and asked me to be observant for the

next three months and bring it up again with him if we

were still concerned at her 18-month check-up. That's

when we started our round of doctors. From the family

doctor to an orthopedic doctor, who sent us to a

colleague at a major medical center, who sent us to

the pediatric rheumatology department.

That's the beginning of our story in a nutshell.

My daughter was diagnosed with pauci-articular JA.

She later developed uveitis. Initially, only one knee

was arthritic, but her other knee developed arthritis,

too, and a few years later, her big toe also developed

arthritis. Her arthritis and uveitis are very mild,

compared to so many, but her uveitis is extremely

stubborn.

Tammy (Mom to , who turns nine this week!

Pauci-articular JA and related uveitis).

http://www.geocities.com/tlzeigler/sJRA.html

--- lilsnugglesx3 <lilsnugglesx3@...> wrote:

> Hey everyone,

> Im , Im 20 I've had JRA since I was 18 mnths

> old.. I was

> wondering who else got it at that age and how did

> you know there was

> something wrong? I somehow ended up with a virus,

> then it lead to

> arthritias, I had a flare up I always had a fever,

> My parents took me

> to every doctor possible, even out of the state of

> new jersey, they

> took me to the childrens delaware depont hospital,

> Im not sure how

> many days I was admitted there but they couldnt find

> out what was

> wrong with me. Well they thought I had tight

> hamstrengths which is a

> tendon in the back of your knee, so they did surgery

> on me for that.

> Come to find out thats not what I had, so all that

> was done for

> nothing. Im here in this group, I want to know

> everyone elses

> experiences.

> * (20)

>

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Audrey was diagnosed at 13 months old, and she's 3 1/2 now. We're still in

an active flare after 2 1/2 years. She's on Enbrel and methotrexate. We

still have significant swelling in her toes. Her rheumy said that if she

starts complaining of pain, we will change the course and go to more

aggressive treatment, but otherwise we will stay the course.

One thing I've learned is that with really little ones, to them the pain

becomes normal. It's all Audrey has known, which is really sad. But she

has the greatest smile in the whole world, and is generally a happy little

girl. I admire her for not letting anything stop her.

And by the way, she's gone 2 whole days of going potty in the potty like a

big girl! Wahoo!

Original Message:

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

From: twoand2girls twoand2girls@...

Date: Wed, 18 Oct 2006 15:28:47 -0000

Subject: JRA

My daughter is 2 and has had JRA in one knee for 8 months. She's

rubbing her eye now for over a week. I'm concerned about uveits. I

welcome stories of toddlers with JRA, particularly the really young

ones, like .

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[Guest guest]

Hello-

Oh Okay.. thanks for letting me know.

Issadora

On Thu, Oct 16, 2008 at 2:02 PM, myshel1_01 <Mathena@...>wrote:

> Issadora,

>

> I just looked at some of the pages i have saved on the pc, for SID.

> And it says, SID is not related to autism or ASD. SID is a disorder in

> and of itself.

>

> , Bryon, Jordon 8, 7

>

>

>

--

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

Silver and Cold).

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

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

[Guest guest]

My daughter is 5 years old & has Juvenile Rheumatoid Arthritis. Any have any

experience with LDN & kids & JRA?

Thank you so much for your help!

Kellea

[Guest guest]

Poor kid!

While I have no specific info on JRA and

LDN, the ldnnow.com site has a case of a young child with MS being successfully

treated.

Also Id urge you to look at the autism discussion

group where many many children are treated successfully.

As LDN is not specific to any illness –

its job is to enable the immune system to work effectively to manage any assault

on it- the specific condition is not the main issue.

Id also say join our

rheumatoidarthritis-low dose naltrexone discussion group and keep up to date on

peoples experience with RA.

Good luck

Nuala

From:

low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Kellea

Sent: 31 May 2010 02:27

low dose naltrexone

Subject: [low dose naltrexone] JRA

My daughter is 5 years old & has Juvenile

Rheumatoid Arthritis. Any have any experience with LDN & kids & JRA?

Thank you so much for your help!

Kellea