Re: new doctor , new ideas

[Guest guest]

Teri,

Kaylee had injections in both knees back in February and has done really well

since then, with the knees that is. We are fixing to do the same for her ankles.

I am supposed to find out today when we will have it done, they told me

yesterday it will either be the 9th or the 16th of this month. I can't wait! It

was scary having her put to sleep, but she has no recollection of it at all. She

did great and I hope the next round goes just as well. Good luck and don't worry

too much.

and Kaylee 2 pauci

new doctor , new ideas

Belle had her appointment with her new rheumy at children's in

Seattle yesterday … boy is he young ! The appt took about two

hours so as you can tell he was very thorough . He also consulted

with a senior Dr and they gave us some pain relief options for her .

None of the anti inflammatory have worked and she is on her fourth

type in six months , so we knew what we were headed for. They said

we could try the oral prednisone or we could go for the injection

directly in her hip. After lots for discussion we decided on the

injection . Believe me ,it was not an easy decision but we feel

it's the best way to get Belle out of pain and let her be a healthy

active kid this summer. They said we could get four to six months

of " good days " from the injection , but she of course will

have to be put out completely for the procedure and that scares me .

We also were told her JRA isn't acting textbook so he was wondering

weather she was given the correct classification of

Pauciarticular , but he would study her charts more before our next

appt in six weeks and give us his opinion then. Either way , this

injection was going to give her relief and everything was going to

work out great ! One funny thing happened though , I am VERY

Caucasian ( lily white in fact ) but my daughter has very dark skin

and almond shaped eyes , as we were sitting there and he was going

through her file the doctor asked (very seriously) is " Belle

adopted ? " Just then my husband walked in … he is Japanese & plains

Indian … we all had a good laugh !!

Teri ( Belle Pauci 10 y/o )

[Guest guest]

They said we could get four to six months

of " good days " from the injection , but she of course will

have to be put out completely for the procedure and that scares me .

Teri-

You are EXACTLY where I am today. Genevieve is going in tomorrow. They will do

an ultrasound on her knee, then we have an MRI on her ankle and foot. They will

then call the rheumy who will decide where to inject and how much immediately.

Genevieve does not sedate well. She becomes agitated. Last time we tried to

sedate, we were at the hospital for 2 days before they got her under and the MRI

done. I HATE putting her under. That is why they will do the MRI and injection

all on the same day. It scare the bejeebers (is that a word?) out of me. BUT,

last time they injected, she went into a 7 month remission and was med. free for

6 months. :-) The " good days " are totally worth it, but I will feel better once

tomorrow has passed. She has been crawling around the house several of the

mornings lately since she can't walk when she gets up. But she does it with a

smile on her face. My husband asked, " Does your leg hurt? " She replied " No " ,

giggled and crawled away. Breaks my heart that it is just such a way of life for

her.

By the way, I have a 5 year old Belle, AKA Isabella, Bella, Belle E. Button.

(Somehow that became a frequently used nickname. We joke that we will have to

stop calling her that soon or she may head off to work in Vegas. LOL)

Therese Z.

Genevieve 10/2/02

Pauci 1/04

Uveitis 1/04

[Guest guest]

Thanks !

I need people to tell good stories … the scary one I can do

without . I just hate having my kids put out completely. Belle had

surgery on her hands when she was three and I got to stay in with

her while they sedated her. Even though they told me what would

happen I was a bit panicked watching the process. How long has the

injection worked for Kaylee ? and did she have much pain in the days

after the procedure ? We were told that it could be very painful for

a day or two afterwards .

Teri

> Teri,

> Kaylee had injections in both knees back in February and has done

really well since then, with the knees that is. We are fixing to do

the same for her ankles. I am supposed to find out today when we

will have it done, they told me yesterday it will either be the 9th

or the 16th of this month. I can't wait! It was scary having her put

to sleep, but she has no recollection of it at all. She did great

and I hope the next round goes just as well. Good luck and don't

worry too much.

> and Kaylee 2 pauci

>

> new doctor , new ideas

>

>

> Belle had her appointment with her new rheumy at children's in

> Seattle yesterday … boy is he young ! The appt took about two

> hours so as you can tell he was very thorough . He also consulted

> with a senior Dr and they gave us some pain relief options for

her .

> None of the anti inflammatory have worked and she is on her fourth

> type in six months , so we knew what we were headed for. They said

> we could try the oral prednisone or we could go for the injection

> directly in her hip. After lots for discussion we decided on the

> injection . Believe me ,it was not an easy decision but we feel

> it's the best way to get Belle out of pain and let her be a

healthy

> active kid this summer. They said we could get four to six months

> of " good days " from the injection , but she of course will

> have to be put out completely for the procedure and that scares

me .

> We also were told her JRA isn't acting textbook so he was wondering

> weather she was given the correct classification of

> Pauciarticular , but he would study her charts more before our

next

> appt in six weeks and give us his opinion then. Either way , this

> injection was going to give her relief and everything was going to

> work out great ! One funny thing happened though , I am VERY

> Caucasian ( lily white in fact ) but my daughter has very dark

skin

> and almond shaped eyes , as we were sitting there and he was going

> through her file the doctor asked (very seriously) is " Belle

> adopted ? " Just then my husband walked in … he is Japanese &

plains

> Indian … we all had a good laugh !!

> Teri ( Belle Pauci 10

y/o )

>

>

>

>

>

>

>

>

>

[Guest guest]

Teri-

Uh oh. I hope you weren't referring to my email as being scary. I guess maybe I

poorly worded it. I completely empathize with you fearing putting her under and

sometimes feel like I am all alone with that. Noone around here, family or

friends realizes how I feel. I guess I was glad I was not alone. The injection

was not painful for Genevieve at all. I don't think she had any pain from it. It

was a true miracle for her. She went from being a little girl who could not

learn to walk to walking and even running within a few weeks. Sometimes my words

come out wrong in email or I say more than I should. I hope the injection is as

big of a success for Belle as it was for Genevieve!!! Sorry. Maybe I should go

back to lurking and keep my mouth shut.

Therese Z.

Geneveieve 10/2/02

Pauci 1/04

Uveitis 1/04

new doctor , new ideas

>

>

> Belle had her appointment with her new rheumy at children's in

> Seattle yesterday … boy is he young ! The appt took about two

> hours so as you can tell he was very thorough . He also consulted

> with a senior Dr and they gave us some pain relief options for

her .

> None of the anti inflammatory have worked and she is on her fourth

> type in six months , so we knew what we were headed for. They said

> we could try the oral prednisone or we could go for the injection

> directly in her hip. After lots for discussion we decided on the

> injection . Believe me ,it was not an easy decision but we feel

> it's the best way to get Belle out of pain and let her be a

healthy

> active kid this summer. They said we could get four to six months

> of " good days " from the injection , but she of course will

> have to be put out completely for the procedure and that scares

me .

> We also were told her JRA isn't acting textbook so he was wondering

> weather she was given the correct classification of

> Pauciarticular , but he would study her charts more before our

next

> appt in six weeks and give us his opinion then. Either way , this

> injection was going to give her relief and everything was going to

> work out great ! One funny thing happened though , I am VERY

> Caucasian ( lily white in fact ) but my daughter has very dark

skin

> and almond shaped eyes , as we were sitting there and he was going

> through her file the doctor asked (very seriously) is " Belle

> adopted ? " Just then my husband walked in … he is Japanese &

plains

> Indian … we all had a good laugh !!

> Teri ( Belle Pauci 10

y/o )

>

>

>

>

>

>

>

>

>

[Guest guest]

Theresa ,

This is very strange … my name is Theresa too ( I just go by Teri ,

unless I'm in trouble with my parents - then they still use the big

name ) . Your email is field - I live in " " sville " and we

both have a Belle . Ours is belle Rose AKA ; Belly E button ,

Belsey ,Bella , and her favorite as of today " Tink " - for

Tinkerbelle .I'm so glad that your daughter has had such good

results , let me know how things work out tomorrow .Oh , yes I do

believe bejeebers is a word !

Teri

>

> They said we could get four to six months

> of " good days " from the injection , but she of course will

> have to be put out completely for the procedure and that scares

me .

>

>

> Teri-

>

> You are EXACTLY where I am today. Genevieve is going in tomorrow.

They will do an ultrasound on her knee, then we have an MRI on her

ankle and foot. They will then call the rheumy who will decide where

to inject and how much immediately. Genevieve does not sedate well.

She becomes agitated. Last time we tried to sedate, we were at the

hospital for 2 days before they got her under and the MRI done. I

HATE putting her under. That is why they will do the MRI and

injection all on the same day. It scare the bejeebers (is that a

word?) out of me. BUT, last time they injected, she went into a 7

month remission and was med. free for 6 months. :-) The " good days "

are totally worth it, but I will feel better once tomorrow has

passed. She has been crawling around the house several of the

mornings lately since she can't walk when she gets up. But she does

it with a smile on her face. My husband asked, " Does your leg hurt? "

She replied " No " , giggled and crawled away. Breaks my heart that it

is just such a way of life for her.

>

> By the way, I have a 5 year old Belle, AKA Isabella, Bella, Belle

E. Button. (Somehow that became a frequently used nickname. We joke

that we will have to stop calling her that soon or she may head off

to work in Vegas. LOL)

>

> Therese Z.

> Genevieve 10/2/02

> Pauci 1/04

> Uveitis 1/04

>

>

[Guest guest]

Oh Theresa ,

You said NOTHING wrong ! I was talking about those well meaning

uniformed friends .Like when your pregnant and everyone tells you

their birth stories … those people , not you ! Thank you for being

so kind and letting me have some more insight to this whole

procedure .

Teri

> > Teri,

> > Kaylee had injections in both knees back in February and has

done

> really well since then, with the knees that is. We are fixing to

do

> the same for her ankles. I am supposed to find out today when we

> will have it done, they told me yesterday it will either be the

9th

> or the 16th of this month. I can't wait! It was scary having her

put

> to sleep, but she has no recollection of it at all. She did great

> and I hope the next round goes just as well. Good luck and don't

> worry too much.

> > and Kaylee 2 pauci

> >

> > new doctor , new ideas

> >

> >

> > Belle had her appointment with her new rheumy at children's in

> > Seattle yesterday … boy is he young ! The appt took about two

> > hours so as you can tell he was very thorough . He also

consulted

> > with a senior Dr and they gave us some pain relief options for

> her .

> > None of the anti inflammatory have worked and she is on her

fourth

> > type in six months , so we knew what we were headed for. They

said

> > we could try the oral prednisone or we could go for the

injection

> > directly in her hip. After lots for discussion we decided on the

> > injection . Believe me ,it was not an easy decision but we feel

> > it's the best way to get Belle out of pain and let her be a

> healthy

> > active kid this summer. They said we could get four to six

months

> > of " good days " from the injection , but she of course will

> > have to be put out completely for the procedure and that scares

> me .

> > We also were told her JRA isn't acting textbook so he was

wondering

> > weather she was given the correct classification of

> > Pauciarticular , but he would study her charts more before our

> next

> > appt in six weeks and give us his opinion then. Either way ,

this

> > injection was going to give her relief and everything was going

to

> > work out great ! One funny thing happened though , I am VERY

> > Caucasian ( lily white in fact ) but my daughter has very dark

> skin

> > and almond shaped eyes , as we were sitting there and he was

going

> > through her file the doctor asked (very seriously) is " Belle

> > adopted ? " Just then my husband walked in … he is Japanese &

> plains

> > Indian … we all had a good laugh !!

> > Teri ( Belle Pauci 10

> y/o )

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

-Teri,

IM glad that Belle's condition is being seen by someone new and you

are getitng some fresh ideas. I hope the injection helps with night

pain and gives Belle a painfree summer. She sure deserves it.

hugs Helen and (7 systemic)

-- In , " branx4 " <branx4@y...> wrote:

> Belle had her appointment with her new rheumy at children's in

> Seattle yesterday … boy is he young ! The appt took about two

> hours so as you can tell he was very thorough . He also consulted

> with a senior Dr and they gave us some pain relief options for

her .

> None of the anti inflammatory have worked and she is on her fourth

> type in six months , so we knew what we were headed for. They said

> we could try the oral prednisone or we could go for the injection

> directly in her hip. After lots for discussion we decided on the

> injection . Believe me ,it was not an easy decision but we feel

> it's the best way to get Belle out of pain and let her be a

healthy

> active kid this summer. They said we could get four to six months

> of " good days " from the injection , but she of course will

> have to be put out completely for the procedure and that scares

me .

> We also were told her JRA isn't acting textbook so he was wondering

> weather she was given the correct classification of

> Pauciarticular , but he would study her charts more before our

next

> appt in six weeks and give us his opinion then. Either way , this

> injection was going to give her relief and everything was going to

> work out great ! One funny thing happened though , I am VERY

> Caucasian ( lily white in fact ) but my daughter has very dark

skin

> and almond shaped eyes , as we were sitting there and he was going

> through her file the doctor asked (very seriously) is " Belle

> adopted ? " Just then my husband walked in … he is Japanese &

plains

> Indian … we all had a good laugh !!

> Teri ( Belle Pauci 10

y/o )

[Guest guest]

Teri,

Knowing what I have learned from this list about the injections vs.

our own experience with oral steroids, I'd take the injections also.

I'm glad you and the new rheumy were very thorough and made a careful

and informed decision that you will be happy with. Best of luck with

the injection.

Stacia and Hunter 9 systemic, iritis

[Guest guest]

Hey Stacia ,

Yah , the injections seems like the way to go . I asked the Dr

what her would do if it was his daughter and he told us an injection

would be his choice . Why deal with all of the by products of oral

stuff when she really is just bothered in one area . Besides,

having a daughter going through normal puberty issues and then add

more mood changes to it voluntarily seems crazy to me !

Teri

> Teri,

>

> Knowing what I have learned from this list about the injections

vs.

> our own experience with oral steroids, I'd take the injections

also.

> I'm glad you and the new rheumy were very thorough and made a

careful

> and informed decision that you will be happy with. Best of luck

with

> the injection.

>

> Stacia and Hunter 9 systemic, iritis