Re: THANKS A MILLION

[Guest guest]

Welcome to the Group ELI

hi i am Robbin mom to lolol havent replied in a few days as you said doing the mom thing lolol right now i am wondering if its wednesday or tuesday lolol when you write a email remember several see and read it your not alone in this fight for our kids and your not alone with how your feeling inside sorry to here that your closest members of your family isnt with you at this time but you have family and friends whos looking after you and your child and a newly found family this JRA group where do you live? i am in Atlanta Ga use to be called HOTLANTA lolol right now its cooler than normal but still nice my daughter has poly shes 15 and doing ok even though she has ups and downs and new things come up from this disease i wonder whats going to pop up next will it be a complication or is this time normal it never ceases email anytime and cant wait for you to let us know about the appointment

some other things to remember do you have copies of lab works done and xrays? get your own personal folder going for your own use most have this its easy to ask for and will help in the near future make sure you keep a calendar of any visits to doctors and ERs and what for another thing is to have fun with your child and measure how round is her knees the length of the legs things like that its something that you and your child will have fun with and give you a dated info

just like how tall and the weight of the child we learn new things as we go and that info i tell the group some have done it some its new info lolol we are in this together and so far i have learned more from this group than from the doctors its really amazeing how internet helps so many who thought they were fighting this disease alone Robbin

[Guest guest]

Hi Robbin, Yes, I know that many see my posted mail. That's why I just wanted to get a big one posted thanking all. I have her x-rays and her labs, I have folders and measurements and all kinds of stuff. I think it helps me to feel more in control of a situation that is totally out of my control. We live in Valley Glen, a suburb of Los Angeles. Hot as heck out here. Sorry to hear about all the flooding everywhere else. Try to stay warm and dry everyone. The only flooding out here is from excessive sweat lol.

have a great day parents and kids alike,

Eli and Riley 4 (poly?)

[Guest guest]

Hi,

Robbin hit the nail right on the head, here. As for me, we were really busy here at home last week too, so much so that I never got online to send in an update or any other posts. I've missed all of you. Am now finally having a chance to catch up with reading all of the messages.

Josh had a rough week. Wound up needing to bring him back to the doctor. No sooner did I write that "he never gets a fever anymore" ... and sure enough, he was having fevers for several hours at a time for several days in a row. Saw a different weekend pediatrician, who advised that I contact his rheumatologist. Dr. Dave listened to what was going on and advised that we raise his dose of steroids back to 5mgs a day to try to get things under control. I guess it's working. Instead of worse, he's getting better. His knees were aching, his ankles, his shoulders, a couple other joints and muscles. Had that chostochondritis pain again, in his chest and ribs. Needed lots of rest, though it hurt when he laid down so it was difficult for him to sleep well. We did the heating pad, hot moist compresses, lots of hot baths/showers. Applied icy hot cream, for extremely short-term relief. Poor little guy was talking like the character on the tv show Malcolm ... the one in the wheelchair. Short gasps, catch a shallow breath, say a few more words. And, God forbid, if someone should say something that strikes as funny. Laughter seems to hurt most of all! Well ... laughing, coughing, hic cupping. Then, don't be surprised if tears start to flow. Yikes. What a roller coaster ride. But, he is feeling lots better. Not yet 100% but well on the way. Postponed getting his blood work done, since the numbers probably wouldn't have looked too good. Will do that before our next rheumy appt (on Friday). Wondered if possibly might have had some kind of reaction to the growth hormone injections ... ? Dr. and nurse both said not likely. But that's all that's changed, I think. Unless he caught some kind of viral something or other.

Oh well. I'm just glad that things seem to be improving. Josh went back to school yesterday. Wasn't going to do PE, though. He'll be able to play more physically again, once he recuperates.

Aloha,

Georgina

----- Original Message -----

From: Robbin40@...

lolol havent replied in a few days as you said doing the mom thing lolol your not alone in this fight for our kids and your not alone with how your feeling inside but you have family and friends whos looking after you and your child and a newly found family this JRA group i wonder whats going to pop up next will it be a complication or is this time normal it never ceases we learn new things as we go and that info i tell the group lolol we are in this together and so far i have learned more from this group than from the doctors its really amazeing how internet helps so many who thought they were fighting this disease alone Robbin

[Guest guest]

Georgina..sorry to hear that Josh wasn't feeling well and glad to read he is

starting to feel better. I sure wish I could go to the AJAO conference..I

would love to meet Josh..maybe next year...well take care and good

luck..hang in there ((((josh))) show old Arthur he can't keep a strong guy

like you down.

karen(tab17..poly)

From: " Georgina " <gmckin@...>

Reply-

< >

Subject: Re: Thanks a million

Date: Tue, 14 May 2002 13:48:30 -1000

Hi,

Robbin hit the nail right on the head, here. As for me, we were really busy

here at home last week too, so much so that I never got online to send in an

update or any other posts. I've missed all of you. Am now finally having a

chance to catch up with reading all of the messages.

Josh had a rough week. Wound up needing to bring him back to the doctor. No

sooner did I write that " he never gets a fever anymore " ... and sure enough,

he was having fevers for several hours at a time for several days in a row.

Saw a different weekend pediatrician, who advised that I contact his

rheumatologist. Dr. Dave listened to what was going on and advised that we

raise his dose of steroids back to 5mgs a day to try to get things under

control. I guess it's working. Instead of worse, he's getting better. His

knees were aching, his ankles, his shoulders, a couple other joints and

muscles. Had that chostochondritis pain again, in his chest and ribs. Needed

lots of rest, though it hurt when he laid down so it was difficult for him

to sleep well. We did the heating pad, hot moist compresses, lots of hot

baths/showers. Applied icy hot cream, for extremely short-term relief. Poor

little guy was talking like the character on the tv show Malcolm ... the one

in the wheelchair. Short gasps, catch a shallow breath, say a few more

words. And, God forbid, if someone should say something that strikes

as funny. Laughter seems to hurt most of all! Well ... laughing, coughing,

hic cupping. Then, don't be surprised if tears start to flow. Yikes. What a

roller coaster ride. But, he is feeling lots better. Not yet 100% but well

on the way. Postponed getting his blood work done, since the numbers

probably wouldn't have looked too good. Will do that before our next rheumy

appt (on Friday). Wondered if possibly might have had some kind of reaction

to the growth hormone injections ... ? Dr. and nurse both said not likely.

But that's all that's changed, I think. Unless he caught some kind of viral

something or other.

Oh well. I'm just glad that things seem to be improving. Josh went back to

school yesterday. Wasn't going to do PE, though. He'll be able to play more

physically again, once he recuperates.

Aloha,

Georgina

----- Original Message -----

From: Robbin40@...

lolol havent replied in a few days as you said doing the mom thing

lolol

your not alone in this fight for our kids

and your not alone with how your feeling inside

but you have family and friends whos looking after you and your child

and a newly found family this JRA group

i wonder whats going to pop up next

will it be a complication or is this time normal

it never ceases

we learn new things as we go and that info i tell the group

lolol we are in this together and so far i have learned more from this

group than from the doctors

its really amazeing how internet helps so many who thought they were

fighting this disease alone

Robbin

_________________________________________________________________

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[Guest guest]

Hi Eli,

It could be poly and it could be systemic. Keep in mind that the Naprosyn could

be keeping the fever down - my son had high fevers - and as he got worse, he

would have high fevers in spite of the Motrin he was taking. This was all

before diagnosed. As his internal organs became more involved his abdomen

became distended, he had a lot of abdominal pain and discomfort and was

lethargic. His rash was transient - moving from place to place - and would

disapear completely for very long periods of time. Each child is different.

Hang in there, I hope the appt goes well tomorrow. I am glad that you have

people there with you & of course we are here for you too! Lots of hugs.

Val

Rob's Mom(4,systemic)

In a message dated Mon, 13 May 2002  7:26:35 PM Eastern Daylight Time,

skyley8@... writes:

>Dear Georgina,Tree, Tina, , Diane, Tammy, Tami, Val, Becky, Rusty,

>e, and everyone else in this group and all of your amazing kids,

>         I just want to thank you collectively for the outpouring of love and

>support that you've sent my way.  I'm getting so many emails that I can't

>respond to them all! (I have to spend some time parenting!) In answer to some

>of your questions, My husband (who is my rock)  left Friday and will be back

>on the 21st or 22nd.  I have a wonderful friends who love and support me.  As

>a matter of fact, they won't let me spend the night alone because they know I

>will just lay in bed and cry.  My mom however is also in Europe.  She left

>the day Riley was diagnosed.  That was hard.  Now I have you all and that is

>the best thing thats happened to me since all of this started.

>         Riley has not had a rash, she had a high fever for a few days before

>she started limping, so maybe it's poly and not systemic?  I can't wait 'till

>thursday.  It's driving me insane.  She can't bend her legs.  She hasen't had

>much of a fever, maybe just a low grade some mornings.  She's already on

>Naprosyn.  Yuck.  It seems to be helping a little, Her knees are way swollen,

>but I think she's walking a little better in the mornings.  Maybe like an 85

>year old woman when last week it was more like a 90 year old.  I guess that's

>some progress.(baby steps)

>         To all of you who have been telling me to keep a log, I guess i'm

>either ahead of the game or fairly anal retentive (probably a touch of both)

>because I have a very detailed log already.  Thank you for making me feel not

>crazy for keeping it!

>         I am trying to stay strong for Riley and the rest of my family

>myself included.  I'm snapping at my 8 year old a bit more than usual so I

>have all of the guilts Tammy, that you mentioned and maybe a few more.  It's

>hard to stay sane in such a crazy time, but thanks to all of you for your

>help over this huge hurdle.  I look foreward to getting to know all of you

>better.  Maybe one day I'll actually be of help to someone else trying to

>deal with this, maybe once I feel a bit less helpless myself.  

>THANK YOU.

>THANK YOU.

>THANK YOU.

>BIG HUGS BACK,

>Eli, Riley's mom4(poly?)

>

[Guest guest]

Hi Val, I've never noticed a rash on her. Does systemic always come on with a noticeable rash or can it come on without one? I'm so worried.

Eli and Riley 4 poly?

[Guest guest]

not always. , systemic 5, when she was diagnosed at 3 had this rash all over her body. and it was itchy. we found out that not only did she have the JRA rash, but she had an allergic reaction to an antibiotic. anyway, point is when she goes into a flare, she does not always have the rash. and about 10% of patients w/ Systemic JRA suffer from itchy rash. just so u know, u really have to look for the rash. It is very light and usually starts out between the legs and underarms. it doesnt necessarily have to start there either. so many different answers and question, any wonder we are so confused???!!! Rae would get the rash on her back, on her stomach, god anywhere and her rheumy is telling me that it starts between legs and under arms, HA! he was not totally correct. Anyway, I digress... when she gets the fever is when to look for the rash. I hope it helps, even if only a little bit.

Theresa, West Palm Beach, FL

>From: skyley8@... >Reply- > >Subject: Re: Thanks a million >Date: Wed, 15 May 2002 21:52:17 EDT > >Hi Val, >I've never noticed a rash on her. Does systemic always come on with a >noticeable rash or can it come on without one? I'm so worried. >Eli and Riley 4 poly? MSN Photos is the easiest way to share and print your photos: Click Here

[Guest guest]

Hi Eli,

I think that most kids with systemic have a rash - but it can vary from child to

child. The first two months he was ill, and the docs were searching for what

was wrong they kept asking about a rash - and I kept telling them there had been

no rash. The day he was being discharged from his first hospitalization he had

a rash show up on one hand, and hour later it was gone - and an hour after that

it was on the other hand - and hour later it was gone and I didn't see another

one until a month later when he was back in the hospital. Then - while changing

his clothes, I noticed it on his back. I pointed it out to the rheumy - who

said yes, that is the typical systemic JRA rash - an hour later he came back

with a camera because he wanted to take a picture of his rash (they were

presenting Rob's case at one of their " chart rounds " type meetings - and he

didn't get a picture because the rash was gone. I don't know about the others -

but that is how it was with Rob. That got me thinking that he may have had

rashes all along that I had missed - It isn't like I am checking his body parts

for a rash every thirty minutes or so to catch one that is going to go away

within an hour. I found it really strange. Later on, I remembered occasions

months before when Rob would have an unexplained fever, and also a rash - and

the pediatrician told me that sometimes with fever children get rashes - so what

were we not seeing then? It can be such a convuluted mystery - that we all

begin to wonder at times. Now i am rambling - so will close for now. (Rob's

had one rash since last summer - that went away as quickly as the others.) Take

care, let us know how the appt goes!

Val

Rob's Mom (4,systemic)

In a message dated Wed, 15 May 2002  9:54:54 PM Eastern Daylight Time,

skyley8@... writes:

>Hi Val,

>I've never noticed a rash on her.  Does systemic always come on with a

>noticeable rash or can it come on without one?  I'm so worried.

>Eli and Riley 4 poly?

>

[Guest guest]

Dear Eli,

With na she had a fine rash for a long time and she was diagnosed with polyarticular only. She did not have any signs of internal organ inflamation which is what the systemic has. But they can have fevers too along with rashes and it be only polyarticular(that's what nas rhemy said). Good luck with your visit today. My prayers are with you both

Jona, mom of na 2 poly

carneyval@... wrote: Hi Eli,I think that most kids with systemic have a rash - but it can vary from child to child. The first two months he was ill, and the docs were searching for what was wrong they kept asking about a rash - and I kept telling them there had been no rash. The day he was being discharged from his first hospitalization he had a rash show up on one hand, and hour later it was gone - and an hour after that it was on the other hand - and hour later it was gone and I didn't see another one until a month later when he was back in the hospital. Then - while changing his clothes, I noticed it on his back. I pointed it out to the rheumy - who said yes, that is the typical systemic JRA rash - an hour later he came back with a camera because he wanted to take a picture of his rash (they were presenting Rob's case at one of their "chart rounds" type meetings - and he didn't get a picture because the rash was gone. I don't know about the others - but that is how it was with Rob. That got me thinking that he may have had rashes all along that I had missed - It isn't like I am checking his body parts for a rash every thirty minutes or so to catch one that is going to go away within an hour. I found it really strange. Later on, I remembered occasions months before when Rob would have an unexplained fever, and also a rash - and the pediatrician told me that sometimes with fever children get rashes - so what were we not seeing then? It can be such a convuluted mystery - that we all begin to wonder at times. Now i am rambling - so will close for now. (Rob's had one rash since last summer - that went away as quickly as the others.) Take care, let us know how the appt goes!ValRob's Mom (4,systemic)In a message dated Wed, 15 May 2002 9:54:54 PM Eastern Daylight Time, skyley8@... writes:>Hi Val, >I've never noticed a rash on her. Does systemic always come on with a >noticeable rash or can it come on without one? I'm so worried.>Eli and Riley 4 poly?>

[Guest guest]

Awww thanks a million for your kind words Cheryl Again, good luck

Saturday with the casting AND the dreaded drive! Bring some

Excedrin

Hugs!

Debbie Abby's mom DOCGrad

MI

> I know so much about plagio and how it is treated because of

everyone

> in this group. I have the insight now to ask questions and be

> assertive now because of everyone's experiences that they have

shared.

> I will keep you posted.

> Cheryl

> mom to Cody

> STARbanded 04/02/03

> bandless at the moment:(

[Guest guest]

Cheryl,

It's what were here for! This group is what it is b/c of ppl like

Debbie and , who stick around long after their babies have

graduated! Good luck Saturday!

> I know so much about plagio and how it is treated because of

everyone

> in this group. I have the insight now to ask questions and be

> assertive now because of everyone's experiences that they have

shared.

> I will keep you posted.

> Cheryl

> mom to Cody

> STARbanded 04/02/03

> bandless at the moment:(

[Guest guest]

Cheryl, I feel the same way as you. If it weren't for this group I

would have never known that my daughter had an ill fitting band and

inexperienced ortho. I wouldn't have known what questions to ask.

Since I rec'd so much " expertise " from this board, I feel an

obligation to it.

dustie

> I know so much about plagio and how it is treated because of

everyone

> in this group. I have the insight now to ask questions and be

> assertive now because of everyone's experiences that they have

shared.

> I will keep you posted.

> Cheryl

> mom to Cody

> STARbanded 04/02/03

> bandless at the moment:(