New member

[Guest guest]

,

Hello. i just wanted to let you know I live in philadelphia and my daughter is

treated at St. 's by one of the greatest doctors. She is 2 1/2 with

Pauci/Poly.) still hard to tell the difference, atleast for me. But I would be

happy to give you any info. about the Dr.'s here.

.

WILLIAM PRICE <bc.price@...> wrote:

Welcome . I hope someone chimes in from the Northeast to help you.

I found on the Adult Still's listserve and recommended that she pop

over here. I told her how great Georgina is. Georgina is probably swamped

after all of the new people from AJAO. (n, 15, systemic)

New Member

> My 11 year old son has just been diagnosed with Still's disease. He has

ankle

> pain and at night he often feels as if he is on fire yet he has no

> Temperature.This past Dec he had high fever and his abdominal lymph

> nodes were swollen. That lasted about 5 weeks.At the time they thought it

was

> just a virus. Have been to a rheumatologist who put him on Naproxen which

> helps with the ankle pain but not the burning feeling at night. One day

> feels fine and the next day he feels awful. I have a consult with a pedi

> Rheumatolgist in Philadelphia (We are from NJ)Just looking for any advice

or

> assistance you can offer.

>

>

>

>

>

>

>

[Guest guest]

Hi . I live in Phila and I use Dr. Goldsmith at St. 's

Hopsital. My daughter has poly jra and I think he has been great. He is on the

conservative side. Any questions, please feel free to ask.

Marla and Macie - poly jra

In a message dated 7/28/2004 11:33:45 AM Eastern Daylight Time, " WILLIAM PRICE "

<bc.price@...> writes:

>Welcome .  I hope someone chimes in from the Northeast to help you.

>I found on the Adult Still's listserve and recommended that she pop

>over here.  I told her how great Georgina is.  Georgina is probably swamped

>after all of the new people from AJAO.  (n, 15, systemic)

> New Member

>

>

>> My 11 year old son has just been diagnosed with Still's disease. He has

>ankle

>> pain and at night he often feels as if he is on fire yet he has no

>> Temperature.This past Dec he had high fever and his abdominal lymph

>> nodes were swollen. That lasted about 5 weeks.At the time they thought it

>was

>> just a virus. Have been to a rheumatologist who put him on Naproxen which

>> helps with the ankle pain but not the burning feeling at night. One day

>

>> feels fine and the next day he feels awful. I have a consult with a pedi

>> Rheumatolgist in Philadelphia (We are from NJ)Just looking for any advice

>or

>> assistance you can offer.

>>

>>

>>

>>

>>

>>

>>

[Guest guest]

,

I am new to this also. My 2 year old daughter was diagnosed 2 months ago with

Poly JRA. I am just learning about all the meds, treatments etc. I have heard

and read the book of Dr Lehman from NYC. He is supposedly tops in the field.

Since you are in NJ, maybe it is worth looking into seeing him. I live in

Florida and I am comptimplating seeing him too.

Tara and 2 (poly)

New Member

My 11 year old son has just been diagnosed with Still's disease. He has ankle

pain and at night he often feels as if he is on fire yet he has no

Temperature.This past Dec he had high fever and his abdominal lymph

nodes were swollen. That lasted about 5 weeks.At the time they thought it was

just a virus. Have been to a rheumatologist who put him on Naproxen which

helps with the ankle pain but not the burning feeling at night. One day

feels fine and the next day he feels awful. I have a consult with a pedi

Rheumatolgist in Philadelphia (We are from NJ)Just looking for any advice or

assistance you can offer.

[Guest guest]

- Thank you so much!! I would like a recommendation. I went for my

appt at CHOP and was very disappointed with the DR. there.

On 7/28/04 3:47 PM, " VICTORIA BURNS " <burnsvbdb@...> wrote:

> ,

>

> Hello. i just wanted to let you know I live in philadelphia and my daughter is

> treated at St. 's by one of the greatest doctors. She is 2 1/2 with

> Pauci/Poly.) still hard to tell the difference, atleast for me. But I would be

> happy to give you any info. about the Dr.'s here.

>

> .

>

> WILLIAM PRICE <bc.price@...> wrote:

> Welcome . I hope someone chimes in from the Northeast to help you.

> I found on the Adult Still's listserve and recommended that she pop

> over here. I told her how great Georgina is. Georgina is probably swamped

> after all of the new people from AJAO. (n, 15, systemic)

> New Member

>

>

>> > My 11 year old son has just been diagnosed with Still's disease. He has

> ankle

>> > pain and at night he often feels as if he is on fire yet he has no

>> > Temperature.This past Dec he had high fever and his abdominal lymph

>> > nodes were swollen. That lasted about 5 weeks.At the time they thought it

> was

>> > just a virus. Have been to a rheumatologist who put him on Naproxen which

>> > helps with the ankle pain but not the burning feeling at night. One day

>

>> > feels fine and the next day he feels awful. I have a consult with a pedi

>> > Rheumatolgist in Philadelphia (We are from NJ)Just looking for any advice

> or

>> > assistance you can offer.

>> >

>> >

>> >

>> >

>> >

>> >

>> >

[Guest guest]

Thank you so much!! We went to CHOP last Thursday and was very disappointed.

On 7/28/04 4:19 PM, " cardiogirl610@... " <cardiogirl610@...> wrote:

>

> Hi . I live in Phila and I use Dr. Goldsmith at St. 's

> Hopsital. My daughter has poly jra and I think he has been great. He is on

> the conservative side. Any questions, please feel free to ask.

>

> Marla and Macie - poly jra

>

>

>

> In a message dated 7/28/2004 11:33:45 AM Eastern Daylight Time, " WILLIAM

> PRICE " <bc.price@...> writes:

>

>> >Welcome .  I hope someone chimes in from the Northeast to help you.

>> >I found on the Adult Still's listserve and recommended that she pop

>> >over here.  I told her how great Georgina is.  Georgina is probably swamped

>> >after all of the new people from AJAO.  (n, 15, systemic)

>> > New Member

>> >

>> >

>>> >> My 11 year old son has just been diagnosed with Still's disease. He has

>> >ankle

>>> >> pain and at night he often feels as if he is on fire yet he has no

>>> >> Temperature.This past Dec he had high fever and his abdominal lymph

>>> >> nodes were swollen. That lasted about 5 weeks.At the time they thought it

>> >was

>>> >> just a virus. Have been to a rheumatologist who put him on Naproxen which

>>> >> helps with the ankle pain but not the burning feeling at night. One day

>> >

>>> >> feels fine and the next day he feels awful. I have a consult with a pedi

>>> >> Rheumatolgist in Philadelphia (We are from NJ)Just looking for any advice

>> >or

>>> >> assistance you can offer.

>>> >>

>>> >>

>>> >>

>>> >>

>>> >>

>>> >>

>>> >>

[Guest guest]

Tara Thanks so much for the recommendation!! I need all the advice I can

get.

On 7/28/04 4:49 PM, " Tara " <bambam31900@...> wrote:

> ,

>

> I am new to this also. My 2 year old daughter was diagnosed 2 months ago

> with Poly JRA. I am just learning about all the meds, treatments etc. I have

> heard and read the book of Dr Lehman from NYC. He is supposedly tops in the

> field. Since you are in NJ, maybe it is worth looking into seeing him. I

> live in Florida and I am comptimplating seeing him too.

>

> Tara and 2 (poly)

> New Member

>

>

> My 11 year old son has just been diagnosed with Still's disease. He has

> ankle

> pain and at night he often feels as if he is on fire yet he has no

> Temperature.This past Dec he had high fever and his abdominal lymph

> nodes were swollen. That lasted about 5 weeks.At the time they thought it

> was

> just a virus. Have been to a rheumatologist who put him on Naproxen which

> helps with the ankle pain but not the burning feeling at night. One day

> feels fine and the next day he feels awful. I have a consult with a pedi

> Rheumatolgist in Philadelphia (We are from NJ)Just looking for any advice or

> assistance you can offer.

>

>

>

>

[Guest guest]

Hmmm, I believe that there is still so much not known about this disease. I

am a 34 year vet and seem to learn more (good and bad) all the time. As for

whether it is inherited I have been told it does have genetic links and I like

others are involved in the family study in Cincinnati where strides are being

made to find the genetic basis. I have been told in regards to my own children

that they have increased odds for obtaining JRA but that does not mean they

will inherit it. I do however call the peds alot asking and inquiring when my

kids complain or limp around the house but so far so good.I have heard so much

on

this matter that I do not know what info is accurate but then thats JRA for

ya...to all a happy day!

hugs and smiles!

Donna

[Guest guest]

My Opinion on this is,

I have 2 kids and no matter what they had I was there for them. Kids are

from a love between 2 people to share. No matter what the child is born with or

without. God will only put on us what we can handle and we are stronger for

it. I have been through so many experiences with my own 2 kids and along with my

siblings that no matter what I was there. God is very special and he sends

us parents kids to love and teach. He knows that we are all special parents and

thats why we were chosen to be parents od these kids. I would not take away a

moment of being my kids mom. Cause during the hardest of painful emotions of

being a parent. Theres always

Thanks Mom I love you and that big hug when they give you that lord that

says it all.

I LOVE YOU MOM no matter what language takes all doubts away from it.

Its not a if my child will get JRA or will have it. Its whether you will

love that child just as much as that child will love you for being its mom.

Being

a parent means you have love unconditionally. God will see you have the

strength to care for your child.

If i looked back into my family medical would i still want a baby theres no

doubt in my mind HECK yes because i love so much and she has taught

me so much From a little 4 pound doll to a 17 year old young lady she is my

baby my joy and happiness

Robbin

[Guest guest]

I was told that its not an inherited disease. My name is e. I am

28, and I have had JRA since I was born or at least age 2. And we are

also TTC. This is a great list. Glad you found it. Its full of great &

interesting people.

~e

<http://www.geocities.com/ourwebnook>

New member

I am 27 years old and was diagnosed borderlie JRA at age 5. I

recently noitced my 4 year old daughter complaining of some of the

same symptoms that I had when I was younger. I called her ped and she

ran blood work. She had SED rate of 17 and low white cell count. She

also had an ANA done that was 320 and speckled pattern. Her Rheum

test was nromal. I have to schedule an appt. with a Rheumetoloigist.

My DH and are currently TTC and I am worried that if DD has it so

will any other child we decide to have. I am not sure what to do at

this point.

[Guest guest]

you got it Robin and yes is one courageous and exceptional young lady

and I am so proud to call the both of you my friends!!!!!!!!!!!

Hugs!!!

Donna

[Guest guest]

I've had JRA since I was 6, and my husband and I are not too

concerned over the possibility of our children having it. Everybody

has their problems, you know? I also have anxiety that's been

treated since I was 3, and my husband has OCD. I have cousins who

are autistic and my brother has Tourrette's Syndrome. I have a

friend who has Crohn's Disease running in her family, and another

who is worried about breast cancer that both her mother and

grandmother had. What I'm saying, I guess, is that having children

is a risky business no matter what. Everybody in the world

has " something wrong " that could maybe be passed on. Even though

your daughter may have JRA, the chances of having other children

with the disease are still very small. And if they do, the

treatments that are around today, and that are being developed as we

speak, are extraordinary, and we can thank God that the future of

children with JRA is very bright.

I'm sorry if I sound preachy, but I've put a lot of thought into

this before. All of the things that might go wrong with our children

is just too much to worry about, in my opinion. I guess you just

thank God that we can have children, and deal with the problems as

they come. I know that wasn't your question, that you are just

wondering what the possibility is of your other children having the

disease. Somehow that question opened something up inside me, and I

just had to say all of this.

Elisheva

[Guest guest]

I hate to sound stupid, but what is TTC?

Christy (Abbie, 15 systemic)

New member

>

> I am 27 years old and was diagnosed borderlie JRA at age 5. I

> recently noitced my 4 year old daughter complaining of some of the

> same symptoms that I had when I was younger. I called her ped and she

> ran blood work. She had SED rate of 17 and low white cell count. She

> also had an ANA done that was 320 and speckled pattern. Her Rheum

> test was nromal. I have to schedule an appt. with a Rheumetoloigist.

>

> My DH and are currently TTC and I am worried that if DD has it so

> will any other child we decide to have. I am not sure what to do at

> this point.

>

>

>

>

>

>

>

[Guest guest]

Not stupid - just one of those computer short hand things. It is, I

believe, Trying To Conceive - TTC. Can you tell I read too many

different message boards that I would know that? LOL. Took me a second

to figure it out myself. Michele

Re: New member

I hate to sound stupid, but what is TTC?

Christy (Abbie, 15 systemic)

New member

>

> I am 27 years old and was diagnosed borderlie JRA at age 5. I

> recently noitced my 4 year old daughter complaining of some of the

> same symptoms that I had when I was younger. I called her ped and she

> ran blood work. She had SED rate of 17 and low white cell count. She

> also had an ANA done that was 320 and speckled pattern. Her Rheum

> test was nromal. I have to schedule an appt. with a Rheumetoloigist.

>

> My DH and are currently TTC and I am worried that if DD has it so

> will any other child we decide to have. I am not sure what to do at

> this point.

>

>

>

>

>

>

>

[Guest guest]

LOL. . .since I am 45 and looking forward to getting Abbie (child #3) out of

the house, I guess there's no way I would know that one. . .

Christy (Abbie, 15 systemic)

New member

> >

> > I am 27 years old and was diagnosed borderlie JRA at age 5. I

> > recently noitced my 4 year old daughter complaining of some of the

> > same symptoms that I had when I was younger. I called her ped and she

> > ran blood work. She had SED rate of 17 and low white cell count. She

> > also had an ANA done that was 320 and speckled pattern. Her Rheum

> > test was nromal. I have to schedule an appt. with a Rheumetoloigist.

> >

> > My DH and are currently TTC and I am worried that if DD has it so

> > will any other child we decide to have. I am not sure what to do at

> > this point.

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hey e...good luck and best wishes on TTC. I have been blessed twice

over and have had JRA 34 yrs so it can be done. If you have any questions ask

away!

Donna

[Guest guest]

Ok TTC

ummm I thought it was something but You got me with trying to concieve lolol

thats a good one.

Robbin

[Guest guest]

Christy,

lololol maybe thats why i couldnt get it either lolol. I am right on your

heels toooooo and is the last one unless I get custody of my niece

lolol shes 17 days old now. has 9 more months and shes a high school

graduate lolol. My days are done but are they really lolol ummmm a moms job is

never done.

Robbin

[Guest guest]

ok lolol TTC Tender tooty cup ok yall i have been relearning mother goose

itsy bitsy spider and patty cake patty cake lololol its raining its raining

its pouring the old man is snoreing or was that its snowing its snowing the

old man is snoreing

and me are reading to this baby and i think deep inside her little

brain shes smiling at us thinking lololol look a here look a here i dont

understand anything yall are doing lolol or could she be saying lolol laughing

at

us cause we forgot the words to nursery storys lolol

Robbin

[Guest guest]

Trying to conceive~ You don't sound dumb!

~e

Re: New member

I hate to sound stupid, but what is TTC?

Christy (Abbie, 15 systemic)

New member

>

> I am 27 years old and was diagnosed borderlie JRA at age 5. I

> recently noitced my 4 year old daughter complaining of some of the

> same symptoms that I had when I was younger. I called her ped and she

> ran blood work. She had SED rate of 17 and low white cell count. She

> also had an ANA done that was 320 and speckled pattern. Her Rheum

> test was nromal. I have to schedule an appt. with a Rheumetoloigist.

>

> My DH and are currently TTC and I am worried that if DD has it so

> will any other child we decide to have. I am not sure what to do at

> this point.

>

>

>

>

>

>

>

[Guest guest]

Hey Robbin ask my mom she reminds me all the time it never really gets

better. A mom is a mom forever...hugs!

Donna

[Guest guest]

Donna~

How was your pregnancy with your JRA?

Also, I was thinking that since my hips are also infected, that I would

end up with a C section. Its always something I ask the Dr. about.

I would love to hear your experiences.

Thanks

~e

Re: New member

Hey e...good luck and best wishes on TTC. I have been blessed

twice

over and have had JRA 34 yrs so it can be done. If you have any

questions ask

away!

Donna

[Guest guest]

Thanks for all the support. DH and I talked about it and we are still

going to try to add to our family.

Ashleigh (DD 4) has an appt. with Dr. Rheuman at Akron Children's

Hospital on Sept. 2. I was also advised to get all of my medical

records regarding JRA, so I called and had them sent from the

shriner's hospital in Erie.

Well more one me, I am 27. The daughter of a Vietnam vet that passed

on in 1989 due to a form of cancer that was inoperable. I was

wondering if anyone else is also the child of a vietnam vet. I have

found alot of of other kids of vets with JRA.

I have not had to actively treat my JRA in about 10 years but still

get minor flareups every once in a while.

I am not too sure what the blood tests that AShleigh had done mean

though. I was wondering if anyone had any thoughts.

ANA 320 speckled pattern

Sed rate 17

White blood count low 4.4 (I think)

RF negative

Thanks so much!

Tresa

[Guest guest]

In a message dated 8/12/04 10:25:48 PM Eastern Daylight Time,

Robbin40@... writes:

> tooty cup ok yall i have been relearning mother goose

> itsy bitsy spider and patty cake patty cake lololol its raining its

> raining

> its pouring the old man

LOL Robbin. One of my very dear friends refers to me as PattyCake:)

Take care.

Patty AKA PattyCake

[Guest guest]

Hi ,

Welcome to you and and I hope is able to get under control

as quickly as possible. I hope this jrs-list helps answer some

questions and provide you with the support that you are not alone in

this fight. The beginning is the hardest it gets, for most.

Typical systemic symptoms include enlarged liver, spleen, lymph

nodes, heart or lung inflammation, fleeting sking rashes and high

fever. A typical systemic JRA child may experience only a couple of

these or all of them, or any number in between. My experience with

the stories on this list is that most, if not all, of the systemics

here have had the high fever and rashes. Each child will present in

their own unique manner. Every case is different.

I won't begin to diagnose 's condition, but you should collect a

list of questions to talk to your rheumy about. Is he being seen by

a pediatric rheumy by chance?

What medication is taking? Some drugs, like methotrexate, can

have nausea and vomiting as side effects. Let us know more.

Best wishes for a restful night for ,

Stacia and Hunter 8 systemic, iritis

> My son has recently been diagnosed with JRA. He experiences a

lot of

> systemic symptoms but the Dr does not think it is " systemic JRA " .

I guess my

> question is are there others who have JRA and when they flare

experience

> any of the following: Vertigo (he awakes sometimes in the middle

of the night

> and feels as if the room is spinning) Nausea, vomiting, and a

burning

> sensation throghout his body( He feels as if he has a fever, yet

he does not)

> Any feedback would be appreciated (mom of 11 years old)

[Guest guest]

Hello , I am known as Rusty and I am a vet of JRA now for 36 years.

I have had at time most of all those symptoms, except for the

vomiting.The only time I experienced that was when meds did not agree

with my stomach. I am one who was never really given a positive

diagnoises. My last rheumy in MI said I was Poly, however the rheumy here

in KY said my inital sysmptoms at the onset of my JRA all sounded like

Stills.

I do recall having a rash that now is said to be symptomatic of systemic.

My eyes were the first to show signs of anything with the onset of

uvitis, which the family doctor thought to be pink eye at first.

I get the burning sensation in my joints at night and night feverand

sweats along with, (but not for a long time)

vertigo.

I remembered that as I was reading your post, strange that I had forgoten

them. But it has been a long time since I last had them.

Hey somebody knok on me cabasa! you know the old adage of " knock of

wood " !

I have always had from the start, some type of joint pain, swelling and

stiffness.

I hope that is of some assistance to you and I will keep young in my

prayers!

Rusty O'Limbs (aka donald)