Re: New Mom dealing with JRA

[Guest guest]

Helen:

Is there a place where I can view the pictures on the JRA list? I know I

couldn't view them with the zip file, but if they are posted somewhere else,

perhaps I can.

Thank you.

Patty

[Guest guest]

I really don't have any words of wisdom if he is still having problems, and he is still on 20mg. Maybe time for the mtx to work. If that doesn't do it, maybe another dmard. Some kids have had good results with enbrel. I know Josh improved when he went to the injectable mtx. Good Luck.

Re: New Mom dealing with JRA

,Sometimes I feel like were caught in a Catch 22 regarding the school issue. Christian really tried to go back but the fatigue and the symptoms began to increase immediately. The Doc said that much of this is due to Christian being so sick for so long, it was before we found this Doctor. He told us today the deconditioning is a big issue with Christian and gave him some exercises to do. Christis really likes school, he's a good student but just doesn't have the energy to attend regularly. You mentioned your Ped rheumy had a different approach. I hope I didn't give you the impression that our Doc is comfortable with Christian missing school. He is trying to get him back in the game but I suppose this is a slow process. Do you have any suggestions on how to expedite the process? Christian is taking 15mg. methotrexate and 20 mg. Prednisone right now, all labs look good except for the d-dimers which is still extremely elevated. Thanks > > In a message dated 1/26/04 5:57:48 PM Eastern Standard Time, > > knoblefamily@c... writes:> > > > << Christian was in > > Fairfax Hospital both times, he now sees Dr. Gewanter in > Richmond. I > > really love him and so does Christian. Prior to >>> > > > Hi :> > > > Caitlin was in Fairfax too. For all we know they could have been > there at > > the same time LOL. When I mentioned your son to Caitlin, she said > it would be > > great to have someone her age to talk to regarding this illness.> > > > Doesn't Liz go to Dr. Gewanter? Were you able to get to your > appointment > > today?> > > > <<Christian's biggest fear is to end up in the hospital again, > > so if we need to take it slow we will do so>>> > > > I can understand that fear. Who wants to go back to the hospital:> ( Slow is > > the best approach. I hope he gets back to school full time soon. > I am sure > > he's missing his friends, etc.> > > > <<Who do you take Caitlin > > to see? Not many in this area.>>> > > > We see Dr. Nguyen in Reston. He sees adults and children, though > he is not a > > pediatric rheumatologist. He did train under the pediatric rheumy > at > > town. Caitlin thinks he's great. He's been right on top of > everything with > > her. Worried about her and called daily from his family vacation > during the > > holidays to check in on her. He is taking an aggressive approach > with her > > treatment too. He is very calm and gentle with Caitlin. I always > feel better after > > leaving his office (well except when he mentioned a bone marrow > biopsy, then > > I left feeling nauseated and panicked).> > > > Take care. Stay warm.> > Patty> > > > ------------------------------------------------------------------------------>

[Guest guest]

Patty,

I emailed you Christian's rash pictures...let me know if you get them.

> Helen:

>

> Is there a place where I can view the pictures on the JRA list? I

know I

> couldn't view them with the zip file, but if they are posted

somewhere else,

> perhaps I can.

>

> Thank you.

> Patty

[Guest guest]

I would love for the kids to get together too.

> In a message dated 1/28/04 3:04:39 PM Eastern Standard Time,

> helenchollingsworth@j... writes:

>

> << The AJAO is the kids' Arthritis foundation (?American Juvenile

> Arthritis Org?). I think it's part of the bigger foundation, but

it is

> geared towards kids and their parents. They publish a

newsletter " kids

> get arthritis too, " which I like. It encompasses jra plus many

other

> rheumatic diseases. In our area, they have several local get-

togethers a

> year (3 or 4) that are a lot of fun for the kids and are an

opportunity

> for pare >>

> Hi Helen:

>

> This sounds like a great organization! Thank you for telling me

about it.

>

>

> << I agree, we should get together some time. I can say

for

> myself that the first year of this was extremely hard for our

family, and

> would be happy to offer any help I can. I especially think it

helps the

> kids to meet other kids like them, because it's so foreign to them

and

> because their friends don't often understand. hh

> >>

>

> I, and Caitlin, would LOVE to get together. All four of us

Virginians should

> and anyone who is close neighbors (DC, MD, etc.).

>

> Take care.

> Patty

[Guest guest]

Hi Patty

Helen, and I are all associated with

the Metro DC chapter. We do have a lot of people from Loudon who get involved

also, so you wouldn’t be the only one.

I think a get together with the kids would

be great! They are all old enough~~~ even the siblings~~~ that we moms would

still be able to talk. And we can always have a “Moms run away from home”

evening out, too!

Liz

Re: New Mom dealing

with JRA

In a message dated 1/28/04 3:21:02 PM Eastern Standard

Time,

liz_smith@... writes:

<<

Patty, because you are in Loudon County you are

technically associated

with the Virginia Chapter of the Arthritis

Foundation which is based in

Richmond, but because you live closer to DC you

may prefer to attend

functions hosted by the Metropolitan Washington

Chapter. Helen and I did

meet last year at the Holiday Party hosted by the

DC chapter. And, as

said, we were put in touch with one

another through the

Foundation.

It would be fun to get together. Caitlin, Teddy,

Christian and are

all the same age. Christian and actually

share a birthday!

Liz

>>

Hi Liz:

Thank you for the information. Which group

are you a part of? I realized

Christian and shared a birthday when I

looked at the JRA Directory List

LOL, they can celebrate together. My oldest

daughter shares her birthday with a

boy down the street who has been in almost all her

classes since preschool

(she's 13). His mom and I would always

coordinate who brought vanilla cupcakes

vs. chocolate cupcakes and/or candy, drinks,

etc. That way we never brought

the same thing and the whole class PIGGED OUT LOL,

they loved Alyssa and

's birthday.

Isn't it weird that they are all the same

age. Plus the fact that they all

live relatively close. I think they are all

systemic JRA too, aren't they? We

should arrange a get together for the kids and

adults or just adults,

whichever works out.

Take care.

Patty

Groups Links

·

To visit your group on the

web, go to:

/

·

[Guest guest]

.

All i did was attach my pictures to a mail i sent. So they are gone now. I wonder if Georgina will allow us to have a folder in the photo section to put pics of systemic rashes etc???? I would be very interested in seeing your photos.

Hugs Helen, mom to (6,systemic) There are now three new levels of MSN Hotmail Extra Storage! Learn more.

[Guest guest]

,

Welcome to a rather unpopular club. My daughter Abbie, now 14 was diagnosed at 10 with systemic onset after 6 months of symptoms. She actually missed about 10 weeks of school in 5th grade and then another 6 when she flared severely in 6th grade. However, she did fine, and we had lots of wonderful help from teachers and administrators.

I am sorry that Christian is doing poorly now, but take hope. It takes time to get meds adjusted as each child is different. Abbie is currently on 25 mg methotrexate given subq, 300 mg celebrex, 400 mg plaquenil, several folic acids, and the kicker is an infusion of Remicade every 8 weeks. Before the Remicade, she was on a yoyo of prednisone that went between 10 and 40 mg per day for over 2 years. She is now completely prednisone free, and doing well.

She lives a healthy active life. She has regular school attendance, actively plays violin and guitar, and plays softball. While she has not recovered, and I don't know if she ever will, her athletic skills, she has come to terms with it, and is pleased with what she can do. At 10 she was traveling in a 4 state area playing tournament level soccer every weekend. I must say the silver lining is that this stress is gone. I guess what I am trying to say, is that the next 4-6 months will probably be somewhat of a roller coaster, but your son will come out the other side a much stronger, and better adjusted young man. You will get him back (slightly different, but very probably better).

Sorry this is so long, but I just want you to know that it will get better.

Christy (Abbie, 14 systemic)

[Guest guest]

Abbie also was diagnosed with a "post-strep infection" early on.

Christy (Abbie, 14 systemic)

[Guest guest]

Hi :

Thanks for sending the rash pictures. Unfortunately, I can't open zip

files:( We will have to compare in person someday.

Take care.

Patty

[Guest guest]

In a message dated 1/29/04 7:22:17 AM Eastern Standard Time,

liz_smith@... writes:

<<

Hi Patty

Helen, and I are all associated with the Metro DC chapter. We

do have a lot of people from Loudon who get involved also, so you

wouldn't be the only one.

I think a get together with the kids would be great! They are all old

enough~~~ even the siblings~~~ that we moms would still be able to talk.

And we can always have a " Moms run away from home " evening out, too!

Liz

>>

Hi Liz:

How can I get information about the DC chapter?

LOL, well, your kids must be calmer than mine. When we all go anywhere, it's

constant chatter from my three:) I do like that " moms run away from home "

thought too:)

Take care.

Patty

[Guest guest]

Patty,

Wonderful Georgina has created a file under the photo section... she put Nicks pictures in there... That girl is just amazing huh!! ))

Hugs Helen, mom to (6,systemic)

Hugs..Helen DH Dan DS's (20)(14)(11)Zachary(9)(6) And DD Yuping Burger, adopted May 9th 2000 DuChang, JiangXi, China DOB 3/29/99 ACR 0-9 mths (11 mths at referral) DTC 7/22/99 DOR 2/25/00 (219 days of waiting) DOT 5/5-5/20/00>From: Emeraldsx3@... >Reply- > >Subject: Re: New Mom dealing with JRA >Date: Wed, 28 Jan 2004 19:10:45 EST > >Helen: > >Is there a place where I can view the pictures on the JRA list? I know I >couldn't view them with the zip file, but if they are posted somewhere else, >perhaps I can. > >Thank you. >Patty Find high-speed ‘net deals — comparison-shop your local providers here.

[Guest guest]

Patty,

You can reach the DC chapter at

202-537-6800. Calaneet Balas is responsible for education and outreach and is a

lovely young woman. The entire staff in that office is great!

As for calmer kids~~ Probably not! There’s

plenty of chatter here, too. Mine do seem calmer to me these days, but that’s

just because my youngest two are 9 and 12. The others are older….. 17,

19, 21 and 23.

Liz

Re: New Mom dealing

with JRA

In a message dated 1/29/04 7:22:17 AM Eastern Standard

Time,

liz_smith@... writes:

<<

Hi Patty

Helen, and I are all associated with the

Metro DC chapter. We

do have a lot of people from Loudon who get

involved also, so you

wouldn't be the only one.

I think a get together with the kids would be

great! They are all old

enough~~~ even the siblings~~~ that we moms would

still be able to talk.

And we can always have a " Moms run away from

home " evening out, too!

Liz

>>

Hi Liz:

How can I get information about the DC

chapter?

LOL, well, your kids must be calmer than

mine. When we all go anywhere, it's

constant chatter from my three:) I do like

that " moms run away from home "

thought too:)

Take care.

Patty

Groups Links

·

To visit your group on the

web, go to:

/

·

[Guest guest]

Hi Helen:

Now that Georgina created a new file I can see the pictures. Thanks

Georgina! Thanks Helen for sharing the pics. Nick is absolutely adorable.

Take care.

Patty

[Guest guest]

I agree Patty...Nick is a very cute boy!

> Hi Helen:

>

> Now that Georgina created a new file I can see the pictures.

Thanks

> Georgina! Thanks Helen for sharing the pics. Nick is absolutely

adorable.

>

> Take care.

> Patty

[Guest guest]

In a message dated 1/30/04 12:13:49 AM Eastern Standard Time,

gazelle34@... writes:

<<

Abbie also was diagnosed with a " post-strep infection " early on.

Christy (Abbie, 14 systemic)

>>

HI Christy:

" Post strep infection " meaning that she had strep for x amount of time before

it was caught? Had it moved to the blood or still in the throat? Has she

had strep since?

Thank you.

Patty

[Guest guest]

In a message dated 1/30/04 1:39:16 AM Eastern Standard Time,

liz_smith@... writes:

<<

As for calmer kids~~ Probably not! There's plenty of chatter here, too.

Mine do seem calmer to me these days, but that's just because my

youngest two are 9 and 12. The others are older... 17, 19, 21 and 23.

Liz

>>

Wow Liz, my hats off to you. You have been one busy mom.

Take care.

Patty

[Guest guest]

Aww thanks guys,..... I think Nick is kinda cute, but then again, im a little biased )))) he does look much better when hes not sick though....

hugs helen, mom to (systemic,6)

Hugs..Helen DH Dan DS's (20)(14)(11)Zachary(9)(6) And DD Yuping Burger, adopted May 9th 2000 DuChang, JiangXi, China DOB 3/29/99 ACR 0-9 mths (11 mths at referral) DTC 7/22/99 DOR 2/25/00 (219 days of waiting) DOT 5/5-5/20/00>From: "katherine_knoble" >Reply- > >Subject: Re: New Mom dealing with JRA >Date: Fri, 30 Jan 2004 13:30:26 -0000 > >I agree Patty...Nick is a very cute boy! > > > > Hi Helen: > > > > Now that Georgina created a new file I can see the pictures. >Thanks > > Georgina! Thanks Helen for sharing the pics. Nick is absolutely >adorable. > > > > Take care. > > Patty > Check out the coupons and bargains on MSN Offers!

[Guest guest]

Hey guys - it's feeling kind of lonely up here north of the beltway! : ) Just

wanted to say hi & that the Washington DC Chapter is awesome! I hope you guys

are doing well - I am reading posts from the most recent, backwards - so I have

not seen the earlier related ones yet - but thought I'd chime in anyway. Gotta

run - it's time to go pick up Robbie. Let's hope tomorrow's predicted freezing

rain doesn't show up! Stay safe!

Val

Rob's Mom (6,systemic)

In a message dated 1/29/2004 7:54:19 PM Eastern Standard Time, liz_smith@...

writes:

> Patty,

> You can reach the DC chapter at 202-537-6800. Calaneet Balas is responsible

for education and outreach and is a lovely young woman. The entire staff in that

office is great!

> As for calmer kids~~ Probably not! There’s plenty of chatter here, too. Mine

do seem calmer to me these days, but that’s just because my youngest two are 9

and 12. The others are older….. 17, 19, 21 and 23.

> Liz

>

> Re: New Mom dealing with JRA

>

> In a message dated 1/29/04 7:22:17 AM Eastern Standard Time,

> liz_smith@... writes:

>

> <<

> Hi Patty

> Helen, and I are all associated with the Metro DC chapter. We

> do have a lot of people from Loudon who get involved also, so you

> wouldn't be the only one.

> I think a get together with the kids would be great! They are all old

> enough~~~ even the siblings~~~ that we moms would still be able to talk.

> And we can always have a " Moms run away from home " evening out, too!

> Liz

> >>

> Hi Liz:

>

> How can I get information about the DC chapter?

>

> LOL, well, your kids must be calmer than mine. When we all go anywhere, it's

> constant chatter from my three:) I do like that " moms run away from home "

> thought too:)

>

> Take care.

> Patty

>

>

>

>

[Guest guest]

Hey Val~~~

Didn’t mean to make you feel lonely. This particular conversation got started

because we realized that all 4 kids are 6th graders. You, of course,

are always welcome!!!

Liz

Re: New Mom dealing with JRA

>

> In a message dated 1/29/04 7:22:17 AM Eastern

Standard Time,

> liz_smith@... writes:

>

> <<

> Hi Patty

> Helen, and I are all associated

with the Metro DC chapter. We

> do have a lot of people from Loudon who get

involved also, so you

> wouldn't be the only one.

> I think a get together with the kids would be

great! They are all old

> enough~~~ even the siblings~~~ that we moms

would still be able to talk.

> And we can always have a " Moms run away

from home " evening out, too!

> Liz

> >>

> Hi Liz:

>

> How can I get information about the DC

chapter?

>

> LOL, well, your kids must be calmer than

mine. When we all go anywhere, it's

> constant chatter from my three:) I do

like that " moms run away from home "

> thought too:)

>

> Take care.

> Patty

>

>

>

>

[Guest guest]

Hi Patty,

I'm sorry it took me so long to answer, but conditions prevented me from getting to email for a while. We never knew that Abbie had strep at the time. She is the youngest of three, so was very quickly infected for the first time (6 weeks of age) and has had several strep infections since diagnosis. Usually they indicate a flare. Apparently it was in her blood, as she had no strep symptoms.

An interesting side note to this, is that my husband was in day surgery during Abbies 2nd severe flare, and I was talking about it to a nurse who asked me if she had at any time during the initial onset been diagnosed with post strep infection? I wasn't able to get any more out of her, but I have never forgotten it.

Christy (Abbie, 14 systemic)

[Guest guest]

In a message dated 2/22/04 7:17:35 PM Eastern Standard Time,

gazelle34@... writes:

<<

I'm sorry it took me so long to answer, but conditions prevented me from

getting to email for a while. We never knew that Abbie had strep at the

time. She

is the youngest of three, so was very quickly infected for the first time (6

weeks of age) and has had several strep infections since diagnosis. Usually

they indicate a flare. Apparently it was in her blood, as she had no strep

symptoms. >>

Hi Christy:

I was pleased to see your email.

When did Abbie first present with JRA symptoms? What age was she diagnosed?

Forgive me if you've said these before. When she was 6 weeks old did they do

blood tests on her? Is that when she had a positive ASO? Has she ever been

on prophylactic antibiotics to help prevent future strep infections? Caitlin

is on prophylactic antibiotics now, but we are not sure if she will have to

stay on them or not. They aren't sure exactly what she has. Initially, because

of the positive ASO and symptoms they thought Rheumatic Fever, but they are

thinking systemic JRA. Both illnesses mimic eachother greatly, but because of

the strep in the blood, I guess they assumed Rheumatic Fever. I am finding

more people though with positive ASO's, but not having Rheumatic Fever, but

being diagnosed with JRA (and some post-infectious arthritis). Though I have

been

told because she showed no symptoms with the strep that she should go on the

prophylactic antibiotics as another strep infection may not show symptoms and

they don't want it to get in her blood ever again. It's just so scary!

<<An interesting side note to this, is that my husband was in day surgery

during Abbies 2nd severe flare, and I was talking about it to a nurse who

asked me

if she had at any time during the initial onset been diagnosed with post

strep

infection? I wasn't able to get any more out of her, but I have never

forgotten it.>

Was her second severe flare brought on by strep? How is she now? Post strep

infection, maybe post infectious arthritis brought on by strep? I have heard

of this and this is one possibility with Caitlin still. Though I really

think she has systemic JRA. Her illness/symptoms have gone on for, well, since

mid November.

Thanks for answering my questions Christy. Have a great day.

Take care.

Patty