Re: Hi, New Here - 16 Month Old With JRA

[Guest guest]

Welcome. It sounds like your little one is doing well. My daughter has had

systemic jra for 12 years and doing pretty well. Ask away on your questions.

( n , systemic, 22)

Sent from my iPhone

On Mar 10, 2011, at 11:02 AM, " sharon.peabody " <swaleans@...> wrote:

> Hi everyone.

>

> I hope that the day is treating everyone well.

>

> I wanted to introduce myself. My name is Sharon and our youngest child, who is

16 months old, has been diagnosed with JRA. Not to bore you with the long

version, but after a hospitalization over Thanksgiving for a high fever for over

2 weeks and a nasty rash, we ran through the gamut of possible diagnoses ranging

from leukemia, to HLH, to ehrlichiosys and then finally to JRA.

>

> He was on a naproxen regime for a month over Christmas which, according to his

bloodwork, was only holding him steady. He started steroid treatments in January

and just last week we have added Methotrexate in to this treatment. The steroids

appear to have been helping greatly.

>

> I look foward to getting to know folks here and will be stopping in with

questions for those who have been dealing with this longer than we have.

>

> Cheers!

>

>

[Guest guest]

Hello and welcome Sharon! My daughter has had systemic JIA/JRA for about a year

and a half. We have recently weaned her from prednisone and are now weaning the

methotrexate. She is on nightly kineret injections and daily Mobic. This board

has been a Godsend source of support and knowledge for us. I know you'll find

the same. I hope your child responds well to the methotrexate.

nn (, 9, systemic)

>

> Hi everyone.

>

> I hope that the day is treating everyone well.

>

> I wanted to introduce myself. My name is Sharon and our youngest child, who

is 16 months old, has been diagnosed with JRA. Not to bore you with the long

version, but after a hospitalization over Thanksgiving for a high fever for over

2 weeks and a nasty rash, we ran through the gamut of possible diagnoses ranging

from leukemia, to HLH, to ehrlichiosys and then finally to JRA.

>

> He was on a naproxen regime for a month over Christmas which, according to his

bloodwork, was only holding him steady. He started steroid treatments in

January and just last week we have added Methotrexate in to this treatment. The

steroids appear to have been helping greatly.

>

> I look foward to getting to know folks here and will be stopping in with

questions for those who have been dealing with this longer than we have.

>

> Cheers!

>

[Guest guest]

Everyone, thank you so much for the kind words and warm welcomes. It really

helps me to know that this group is here for questions, support and to have a

place to go where others understand.

Sharon (, systemic, 16 months old)

>

> > Hi everyone.

> >

> > I hope that the day is treating everyone well.

> >

> > I wanted to introduce myself. My name is Sharon and our youngest child, who

is 16 months old, has been diagnosed with JRA. Not to bore you with the long

version, but after a hospitalization over Thanksgiving for a high fever for over

2 weeks and a nasty rash, we ran through the gamut of possible diagnoses ranging

from leukemia, to HLH, to ehrlichiosys and then finally to JRA.

> >

> > He was on a naproxen regime for a month over Christmas which, according to

his bloodwork, was only holding him steady. He started steroid treatments in

January and just last week we have added Methotrexate in to this treatment. The

steroids appear to have been helping greatly.

> >

> > I look foward to getting to know folks here and will be stopping in with

questions for those who have been dealing with this longer than we have.

> >

> > Cheers!

> >

> >

>

>

>

[Guest guest]

Hi Sharon,

My daughter was also diagnosed at 16 months this past July. She is on

naproxen, and has had 3 steroid injections so far. I know how overwhelming

and frustrating this disease can be. This group has been so helpful for me

in answering questions and support. Good luck and please reach when you need

to!

Lesley (Maddie, 22 months, puaci)

On Fri, Mar 11, 2011 at 6:56 PM, sharon.peabody <swaleans@...>wrote:

>

>

> Everyone, thank you so much for the kind words and warm welcomes. It really

> helps me to know that this group is here for questions, support and to have

> a place to go where others understand.

>

> Sharon (, systemic, 16 months old)

>

>

> >

> > > Hi everyone.

> > >

> > > I hope that the day is treating everyone well.

> > >

> > > I wanted to introduce myself. My name is Sharon and our youngest child,

> who is 16 months old, has been diagnosed with JRA. Not to bore you with the

> long version, but after a hospitalization over Thanksgiving for a high fever

> for over 2 weeks and a nasty rash, we ran through the gamut of possible

> diagnoses ranging from leukemia, to HLH, to ehrlichiosys and then finally to

> JRA.

> > >

> > > He was on a naproxen regime for a month over Christmas which, according

> to his bloodwork, was only holding him steady. He started steroid treatments

> in January and just last week we have added Methotrexate in to this

> treatment. The steroids appear to have been helping greatly.

> > >

> > > I look foward to getting to know folks here and will be stopping in

> with questions for those who have been dealing with this longer than we

> have.

> > >

> > > Cheers!

> > >

> > >

> >

> >

> >

[Guest guest]

Hi Sharon,

I'm new to the group too, but have not reached out until now.  My now 3 year old

daughter was diagnosed last June when she was 2.5 y.o. with systemic on-set JIA

after having 10 weeks on and off of fevers up to 105.  I even took her to the ER

at one point before we finally did blood work and got in to see a Rheumy. 

 

It's been an up and down roller coaster ride for us.  She too started with

Naproxen twice a day then Methotrexate and Folic Acid and a short period of

prednisone.  What's interesting with my daughter is that her physical exams are

always good - the doctor is always amazed out how great she looks, but her labs

do not show that.  They've been up and down with the highest at 122 sed rate and

305 crp (this past Christmas)- that's when we put her on the steriod for two

weeks and increased her mtx.  Her most recent labs were 2 weeks ago - we thought

we had it under control but found out she was up again.  They were 87 sed rate

and 64.8 crp.  Her doctor mentioned Kineret being the best for SO JIA but she

doesn't want to have to give her a needle daily if we don't have to so we're

going to wait and see what her next labs show in a few weeks.  What do you guys

think about Kineret?

 

The funny thing with my daughter is that she does get fevers every 35 days

still, but they're not as high - only 101 and sometimes I can't even tell when

she's flaring - I have to be diligent about checking her temp.  And the rash

comes less often and same with the joint pain - she'll complain sometimes but

not as much as she used to and there's no redness or swelling.

 

I'm wondering if anyone else ever experienced a similar thing with SO JIA. 

Where the child's physical symptoms are not too bad, but their labs are. 

Lastly, we never ruled out cancer or anything else.  Should we?  Her doctor's

tell me she's diagnosed with SO JIA and her symptoms and labs fit it to a tee,

but I'm curious what you think.

 

Sharon, sorry to bore you with my details.  I just wanted you to know you're not

a lone.  I'd love to connect with you since your son is newly diagnosed and

anyone else as well.

 

Thank you all for listening and for you support to all of us newcomers.

 

Kindly,

Wisniewski

 

 

 

>

>

> Everyone, thank you so much for the kind words and warm welcomes. It really

> helps me to know that this group is here for questions, support and to have

> a place to go where others understand.

>

> Sharon (, systemic, 16 months old)

>

>

> >

> > > Hi everyone.

> > >

> > > I hope that the day is treating everyone well.

> > >

> > > I wanted to introduce myself. My name is Sharon and our youngest child,

> who is 16 months old, has been diagnosed with JRA. Not to bore you with the

> long version, but after a hospitalization over Thanksgiving for a high fever

> for over 2 weeks and a nasty rash, we ran through the gamut of possible

> diagnoses ranging from leukemia, to HLH, to ehrlichiosys and then finally to

> JRA.

> > >

> > > He was on a naproxen regime for a month over Christmas which, according

> to his bloodwork, was only holding him steady. He started steroid treatments

> in January and just last week we have added Methotrexate in to this

> treatment. The steroids appear to have been helping greatly.

> > >

> > > I look foward to getting to know folks here and will be stopping in

> with questions for those who have been dealing with this longer than we

> have.

> > >

> > > Cheers!

> > >

> > >

> >

> >

> >

[Guest guest]

Hi,

The rheumatologist never said what kind of JRA my daughter had, but there has

been an occasion where she seemed normal to myself and the doctor and her labs

were notably elevated as well, so I can relate to what you say. My daughter has

liver issues as well (not at all related to the JRA), so this complicates some

things, but at the time, she seemed totally normal in that respect too.

Jo

> > >

> > > > Hi everyone.

> > > >

> > > > I hope that the day is treating everyone well.

> > > >

> > > > I wanted to introduce myself. My name is Sharon and our youngest child,

> > who is 16 months old, has been diagnosed with JRA. Not to bore you with the

> > long version, but after a hospitalization over Thanksgiving for a high fever

> > for over 2 weeks and a nasty rash, we ran through the gamut of possible

> > diagnoses ranging from leukemia, to HLH, to ehrlichiosys and then finally to

> > JRA.

> > > >

> > > > He was on a naproxen regime for a month over Christmas which, according

> > to his bloodwork, was only holding him steady. He started steroid treatments

> > in January and just last week we have added Methotrexate in to this

> > treatment. The steroids appear to have been helping greatly.

> > > >

> > > > I look foward to getting to know folks here and will be stopping in

> > with questions for those who have been dealing with this longer than we

> > have.

> > > >

> > > > Cheers!

> > > >

> > > >

> > >

> > >

> > >