my som is 5... he has rarest form of JRA

November 29, 2010

hello all

my name is michelle, I am the proud mother of Jordan he is 5 1/2 and on november

4 he was " officially " diagnosed with Stills disease aka systemic onset JRA. I

use the word officially because I figured it out on my own about 4 monthes into

the start of his symptoms (nursing degree and the internet were very helpful) I

am also a member of the stills disease group mostly adults get stills or so I

have been told so but dont completely fit into either group totally we kinda

fit somewhere in between but here we are! we look forward to bieng in here with

you all and learning as we go

, mother of Jordan

November 29, 2010

Welcome. You have come to the right place. I have been here for 11 years. Our

daughter has systemic jra. How is your son doing? What medications is he on?

Does he get the fevers and rashes? Are you seeing a pediatric rheumy?

n is on mtx and occasionally naprosyn. She has been on many different meds

thru the disease process. ( n, systemic)

Sent from my iPhone

On Nov 29, 2010, at 4:10 PM, " michelle_osborne7077 "

<michelle_osborne7077@...> wrote:

> hello all

> my name is michelle, I am the proud mother of Jordan he is 5 1/2 and on

november 4 he was " officially " diagnosed with Stills disease aka systemic onset

JRA. I use the word officially because I figured it out on my own about 4

monthes into the start of his symptoms (nursing degree and the internet were

very helpful) I am also a member of the stills disease group mostly adults get

stills or so I have been told so but dont completely fit into either group

totally we kinda fit somewhere in between but here we are! we look forward to

bieng in here with you all and learning as we go

>

> , mother of Jordan

>

November 30, 2010

Hi and welcome to the group. Many of the children here have systemic JA so,

while I know it is rare, it is unfortunately not rare here. You have found a

place with lots of info and support. Feel free to ask any questions or just vent

when you need. The wonderful parents here will understand how you feel,

Michele ( 23, spondy)

From: [mailto: ] On Behalf Of

michelle_osborne7077

Sent: Monday, November 29, 2010 6:11 PM

Subject: my som is 5... he has rarest form of JRA

hello all

my name is michelle, I am the proud mother of Jordan he is 5 1/2 and on november

4 he was " officially " diagnosed with Stills disease aka systemic onset JRA. I

use the word officially because I figured it out on my own about 4 monthes into

the start of his symptoms (nursing degree and the internet were very helpful) I

am also a member of the stills disease group mostly adults get stills or so I

have been told so but dont completely fit into either group totally we kinda fit

somewhere in between but here we are! we look forward to bieng in here with you

all and learning as we go

, mother of Jordan

November 30, 2010

Hello , and welcome! My daughter was officially diagnosed with

systemic on November 4th - last year, after being checked into Children's

Denver. This board has been a lifesaver for me. You will find wonderful

support and great resources here. I hope your son is doing okay.

nn (, 9, systemic)

>

> hello all

> my name is michelle, I am the proud mother of Jordan he is 5 1/2 and on

november 4 he was " officially " diagnosed with Stills disease aka systemic onset

JRA. I use the word officially because I figured it out on my own about 4

monthes into the start of his symptoms (nursing degree and the internet were

very helpful) I am also a member of the stills disease group mostly adults get

stills or so I have been told so but dont completely fit into either group

totally we kinda fit somewhere in between but here we are! we look forward to

bieng in here with you all and learning as we go

>

> , mother of Jordan

>

November 30, 2010

thank you all for the warm welcomes!

Jordan " seems " to be doing fine but I am told its from the steroids.... his

pediatrition placed him on steroids BEFORE so refferd him out to peds rheumy amd

hematologists! his sed rate was 56 then 1 week later it was 76 she admitedly had

no clue what to do he had been having high fevers for almost 2 straight monthes

with the rash appearing 3 septate times he developed pluerasy and premature

atril complex aka extra heart beat and clotting issues and all she could say was

" i dont know what it is all i can say is its definatley auto-immune and the

liver is definatley involved " so she ordered prednslone 15mg/5ml which I must

say worked overnight! however in the long run it wasnt good idea cause now the

rheumy and hemo doc are both annoyed and have to get him weaned off so the can

see whats really going on we are down to 0.2 (from 5 mls day for 2 months)

tomarrow last day in the meantime plaquinil 1/2 tab and naproxen 6mls twice a

day (which he HATES its a 2 hours fight twice a day)we have methotrexate on

stand by for the flare when and if it happens. anyone know how long we can

expect to go before it all comes back?

>

> Welcome. You have come to the right place. I have been here for 11 years. Our

daughter has systemic jra. How is your son doing? What medications is he on?

Does he get the fevers and rashes? Are you seeing a pediatric rheumy?

> n is on mtx and occasionally naprosyn. She has been on many different

meds thru the disease process. ( n, systemic)

>

> Sent from my iPhone

November 30, 2010

I don't think anyone can tell you if it will come back or not. You have to go

day by day. If he does get the fevers, rashes, enlarged organs, etc., I would

start on the mtx asap. I would not rely on plaquenil for a systemic. Again, my

humble opinion. ( n,21,systemic)

Sent from my iPhone

On Nov 30, 2010, at 4:25 PM, " michelle_osborne7077 "

<michelle_osborne7077@...> wrote:

> thank you all for the warm welcomes!

> Jordan " seems " to be doing fine but I am told its from the steroids.... his